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Dear Lymelighter,
 


NRHA Conference – Medically Abandoned


National Rural Health Alliance
March 24-27 LDAA will present at the National Rural Health Alliance (NRHA) conference in Hobart. Every two years a contingent of people interested in rural health meet to learn, listen and share ideas about how to improve health outcomes in regional, rural and remote Australia. The conference has a well-earned reputation as Australia's premier rural health event.

This year we’ll be adding our voices and educating people about the dire situation that exists for patients with a Lyme-like illness. It’s an important platform for us to share the reality of the thousands of Australians diagnosed with Lyme disease. Our data shows that 33 percent of patients with Lyme live in regional and rural Australia; by virtue of their locality, they suffer a higher burden of illness than that of urban patients.

The conference provides a unique opportunity for us to collaborate more widely in developing urgent recommendations for direct government action. It’s also an opportunity to send a very clear message to all in attendance, including Bridget McKenzie (Rural Health Minister), Catherine King (Shadow Health Minister) and Richard Di Natale (Greens Party Leader).

We’ll be highlighting the stigma associated with having Lyme in Australia, the impact on families, finances and quality of life, and the sordid reality of the situation for patients who’ve been medically abandoned. The audience, which includes medical and political representatives, will not just focus on hearing problems within rural health but will come together to find solutions.

Image result for rural health conference 2019

Follow the Conference and keep up with Tweets at #ruralhealthconf

We’re Better Together

 


Please know that we plan to offer our Lyme patient community with a template letter to engage with your candidates, MPs and Senators during the upcoming Federal election period. The NRHA conference preparation and briefings have taken precedence. Feel free to be in touch if you'd like assistance before we're able to publish letter templates.

We will make a call out for those wanting to collaborate towards a patient's submission to the Medical Board of Australia Public Consultation.  Stay tuned in the coming fortnight.
 

Vale René Michaelis

It is with great sadness that the Lyme community has learned of René Michaelis' passing.

The consequences of medical denial of Lyme disease in Australia are that patients are left untreated. Without treatment they stay sick, get sicker, & many die untimely deaths.

Karen & René Michaelis’ tick-borne infections were neither diagnosed, treated, nor even acknowledged. Privately funded testing by ArminLabs, run by Dr Armin Schwarzbach who is a globally renowned expert in vector-borne diseases, & consultant to the Australian Department of Health in regards to tick-borne diseases in Australian laboratories, showed that both Karen & René had multiple tick-borne infections.

Despite this, René was denied antimicrobials and diagnosed with ALS and offered home care and palliative care.

Tragically, René died, aged 68 on March 5th 2019. We at the Lyme Disease Association of Australia send Karen our deepest sympathies.

Karen and René's full story is here 

 

Did you know that you can now raise funds for the LDAA directly through Facebook?

You can add fundraisers to posts or create one in lieu of birthday gifts......there are so many creative ways you can utilise Facebook fundraising.

All funds raised go to the nominated charity via their PayPal (giving) accounts 😍

We already have 2 amazing peeps who have set up LDAA fundraisers on their profiles & we would like to take this opportunity to thank them so very much 🙏🏻

It's SUPER easy, two ways to do it, 2-3 quick steps and you're on your way!
Watch Jen's quick video to learn how!

 


Some valuable blog posts this month

 
Remember to regularly check out our blog, there's a breadth of information and education for you. This month we've published:
 
Lyme Disease and Relapsing fever found in Australian Patients                     
By Marie Brown. 
Examination of one hundred blood samples from Australian patients suggests that many have been exposed to Lyme disease, tick-borne relapsing fever, or both. 
The results, which have not yet been published in a scientific journal, were described by IGeneX CEO and laboratory director, Dr Jyotsna Shah, in an interview with Marie Brown.
 
Human Biting Ticks, proven to transmit more diseases in Australia 
By Grace Riley                                                                                                                            An exciting new research group has released a new paper reporting on Human tick-borne disease in Australia. The world renowned neuroinflammation scientist Professor Gilles Guillemin of Macquarie University is joined by Professor Eddie Holmes, a leading evolutionary biologist distinguished for his work on the emergence and evolution of viruses, and doctors Bernie Hudson and Richard Schloeffel
 
Death by Psychiatry 
Dr John Curnow and Francene Lee Taylor                               
THE MISTREATMENT OF BARBARA WAS A TRAGIC END TO HER LIFE. Dr John Curnow is a retired Australian veterinarian who, in the 1960s and 70s, was directed by the Commonwealth government to set up a diagnostic laboratory for tick-borne diseases in cattle. He found species of Babesia, Anaplasma, Ehrlichia, Bartonella & Borrelia, among others.

In 2004, John’s wife Barbara, also a veterinarian, was bitten by a tick, her mistreatment is documented in Death by Psychiatry.
.

 
 
  • When Lyme Hurts Your Heart - New research suggests heart symptoms may be present in 0.4% to 10% of Lyme disease patients.
  • Rachel Channon - After years battling an "invisible illness" Rachel Channon has pinned her hopes on a controversial treatment at a clinic in Germany.
  • Death by Psychiatry - The mistreatment of Veterinarian Dr Barbara Curnow  was a tragic end to her life
  • Professor Morten Laane - The suppression of microscopy for Lyme Diagnosis. Why can't scientists see Borrelia under the microscope?
  • Olivia Goodreau - Founder of the  LivLyme Foundation, 14 year old Lyme Disease patient develops groundbreaking app to track tick sightings
  • LDAA's pre-budget submission - A copy of the LDAA submission to the Federal Treasurer.  Pre-Budget Submission sets out four critical areas requiring funding: 
    1. Research that focuses on precision medicine
    2. Practitioner education
    3. Patient support & assistance 
    4. Prevention & awareness campaigns
  • 30 People share their brainfart moments where they failed to remember a basic word. 
  • Dr Jyotsna Shah  - discovers Lyme Disease and Relapsing Fever in Australian patients in samples being analysed using IGeneX recently developed immunoblot tests
  • Human Biting Ticks - proven to transmit more diseases in Australia 
  • 9 Stars who got candid about their battle with Lyme disease 

We would  like to encourage you to become a member of the LDAA if you’re not already.

It's easy and free and you simply fill in this form.  Members are eligible to vote in the elections of LDAA Board Members.
 
The LDAA works tirelessly in the pursuit of seven key areas:
  • Advocates for individuals and families living with Australian Lyme and associated diseases with governments, doctors, and local communities;
  • Facilitates world’s best practice patient care and support;
  • Represents the perspective, lived experience and interests of the Australian Lyme patient community;
  • Acts as a conduit between international developments, research, treatments, and other Lyme communities;
  • Fundraises to facilitate improvements for people living with Australian Lyme and associated diseases by supporting the education of doctors and other health professionals;
  • Fundraises to support research and innovation in epidemiology, diagnosis, and treatment of Australian Lyme and associated diseases;
  • Educates the public and medical sector about the risks of Lyme disease and the need for early diagnosis and treatment (early detection makes this an easily treatable disease).
Your support is invaluable in assisting us to achieve real change for current and future Lyme patients.



Community News & Events

 
ROARR Community Event
30th March, 2019

The "Stand With Us" Campaign is a campaign for the recognition, adequate diagnostics, and treatment of Lyme Borreliosis and tick-borne diseases.  This is a global organisation and a campaign is currently being planned for 30th March, 2019 as a day to participate in ROARR.  Follow the link to find out more.

Chrysalis Support Group – NEW VENUE
Chrysalis meetings are held on every third Saturday of the month from 2-5pm at the
Cockburn Integrated Health meeting room 11, Wentworth Parade, Success, Western Australia (please NOTE change of venue). Contact Ailsa for more information  Facebook   Email

Popular AmpCoil meetings are back
New AmpCoil Pop Up Lounge in Sydney, Australia!⠀⠀⠀⠀⠀⠀⠀⠀⠀
Message from AmpCoil "It’s been about a month since our last visit to this beautiful city, and due to high interest and demand we are back to continue sharing the AmpCoil technology. For a limited time you can register for a complimentary coil session at our pop-up AmpCoil Lounge on Market Street, Sydney. Schedule a session: https://www.ampcoil.com/sydlounge
⠀⠀
Coming soon! We have more AmpCoil events happening in Byron Bay on April 5th and Melbourne on April 13th. Get in touch with us for all the details."

 
 

 

Volunteer With Us

 
Join our wonderful volunteer team! The LDAA works in a virtual environment and it's busier than ever!  You must have access to a computer, a stable internet connection, and have a passion to enact change in your community!  LDAA's roles are expanding; often volunteers contribute to ad-hoc projects beyond their initial involvement. 

Remember to reach out to your 'well' family and friends to invite them to support our cause!
 

Our vacant volunteer positions are:

  1. Fundraising Volunteer | This person will work with the Board in developing an annual fundraising calendar and giving programs. Experience with writing grant applications would be an asset.
  2. Media Volunteer | We need a passionate individual to work with communications and media engagement. This person would work directly with the Social Media Manager and CEO.
  3. IT Manager | Wordpress maintenance with some database work (full position description available on request) - let us know if you're available!
It's a positive team environment and we love collaborating to spearhead change for Australian Lyme patients. Introduce yourself by sending us a message via our contact us form!  We look forward to speaking with you!
 

From the Committee

 

Phew, what a busy and complicated start to 2019!  While our two month recess was important and necessary, we can hardly remember it :-).  

We're very proud and excited to represent the Australian Lyme community at the upcoming National Rural Health Alliance conference.  Our sincere gratitude to the CWA of NSW and CWA of A for their continued advocacy for action for sick Australians.  We're going to do our best to be twitter and Facebook active (watch out for our Facebook Live with a special guest on Tuesday afternoon about 2.30-3.30pm).  The LDAA will have two delegates at the conference from Sunday and we're back Thursday.

We do plan on a collaborative effort for our patient submission to the MBA Public Consultation.  Thank you to everyone who's already reached out, we'll be in touch following the conference.  Our past collaborative works (think 2013 Scoping Study Response or our teamwork towards all the amazing Senate Submissions) have been our most successful and powerful, leaving landmark trails of evidence.

For those of you who are most vulnerable and hopeless - we think of you with every step we take.  We do have the lived experience of just how tough it is, we believe you and we are putting everything we've got into achieving urgent action that truly makes a difference.

'It takes a village' :-)
Yours in Green, 

Sharon Whiteman | CEO (Interim)
Lyme Disease Association of Australia

Disclaimer: Any content within this newsletter is not intended to be a substitute for professional medical advice, diagnosis, or treatment, nor as an endorsement from the Lyme Disease Association of Australia (LDAA).

    
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