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Issue December 2019
Dear Lymelighter,
 

In this impassioned interview, Dr Horowitz calls for action for Australian Lyme patients.

Dr Richard Horowitz is a board-certified internist and the medical director of the Hudson Valley Healing Arts Centre, which has treated over 13,000 patients for tick-borne diseases over three decades.

As LDAA Patron and consultant to the Australian government, Dr Horowitz is well placed to highlight the non-scientifically based inequities experienced by Australian Lyme patients and their doctors. Dr Horowitz has consulted on the Clinical Advisory Committee into Lyme Disease (2012-2015), Senate Inquiry into Lyme-like Illness (2015-2016) and most recently the DSCATT Clinical Pathway (2019).

In this interview, Dr Horowitz highlights where science is being ignored, how Australians have a human right for Lyme and other infections to be included as part of their differential diagnosis, that doctors have a right to choose IDSA or ILADS protocols as they're both evidence-based, and that Australia is the only country in the world that indicates it doesn’t have endemic Lyme disease.  (Australian paper referenced)

Hear Dr Horowitz explain that these people are actually sick, doctors should be compassionate in their approach and treat them like they’d like their own family to be treated.

Video link, Audio link, (transcript to follow)


Did you hear?

Last month the LDAA launched what we believe is a world-first Lyme patient support program – when Lyme gets too big to manage, help is available.

The early feedback is positive and heartwarming. From one patient:
"The opportunity to talk to someone who really understood was fantastic. I hadn't met anyone else with Lyme before so this has been wonderful."

The community carers report being grateful to be able to give back as well, they can tell it's truly making a difference.  We will open for more community carers in January, let us know if you are well enough to help someone else.

If you are impacted by Lyme disease, we encourage you to visit our support website below and get the help you need.

http://support.lymedisease.org.au


LDAA CEO Sharon Whiteman and patients Sue Sherratt and Sylvia Hanuziak have described the struggles Lyme disease patients face in Australia in an unusually balanced article in “The Citizen”. Outlining their descent into chronic illness after a tick bite, and the subsequent long delay getting a diagnosis, both patients describe the dearth of treatment options here in Australia. Sue was bitten in Sydney and Sylvia in Poland, and both eventually returned positive results for Borrelia from Australian laboratories. Fortunately, they have both been able to travel overseas for treatment that is unavailable in Australia.

Getting treatment is almost impossible in Australia, where doctors are discouraged from even testing patients for Lyme disease. Many doctors have lost their practices after being targeted by AHPRA for treating patients who have tested positive, leaving very few doctors who have the training and experience to treat patients for Lyme disease.

Sharon Whiteman explained that policy and research failures have hindered the diagnosis and treatment of tick-borne illness in Australia and asks the very pointed question:

“In what other disease are patients denied hospital care [and] denied disability care, because the research is yet to be completed?”

Access the full story here.



The LDAA would like to extend their gratitude for the professional and ethical collaboration with the patient group known as The Black Dot Project.  

Most people may not be aware that medical research published before 1990 is not necessarily digitalised.  They have done an exceptional service to the whole community in their forensic review of Lyme and other stealth infection research in Australia.  Thank you for those hours and hours of research and medical library review. 

Follow their work on FaceBook
Research Review (Let us know of any omissions, thanks!)
 
Read more about what's happening... 
 

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

 


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, LDAA:
  • 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;
  • Fundraisers to facilitate improvements for people living with Australian Lyme and associated diseases by supporting the education of doctors and other health professionals;
  • Fundraisers 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 Noticeboard

 

New Novel 'The Lyme Conspiracy" by Joseph Bradley Out Now

Now available on Audio Book, ebook - $2.99, Paperback - $12.99
Synopsis
What if a single strain of bacteria were responsible for over three hundred diseases affecting Americans today including: Multiple Sclerosis, Fibromyalgia, Lou Gehrig's disease, Alzheimer's, and Chronic Fatigue Syndrome? And what if the federal government is responsible for the outbreak of these bacteria?...
Facebook   Amazon 

Chrysalis Support Group

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


 

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 & Marketing 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 and/or Social 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. Writing Support | Love to write? | We are in need of support for blogs, grants and technical documents.  We work as a team and it's fun, inspiring and it feels so good to give back.
  4. Counselling Support | Do you have the lived experience of Lyme and want to help others?  Let us know!
  5. Secretarial support | Great team player, organised and high detailed?  Great with computers, dropbox, google drive and filing?  Let us know!
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 Board


We'd like to extend our heart-felt thank you to all the volunteers who've worked hard to make the launch of the LDAA pilot Lyme Support Program as seamless as possible.  The patients on the receiving end are grateful and the professional consultants are understandably astounded.  

"This has been an incredible learning journey, [these are] the most resilient, devastated people I have been privileged to meet in a very long time.  You should be exceptionally proud of yourselves for working to achieve this outcome – you are definitely making a difference – a huge difference." ~ consultant counsellor 

We are aware that many Australian Lyme patients are devastated at the lack of real action that helps patient following the Senate Inquiry. We understand and we hear you.  In partnership with LDAA patron, Dr Horowitz, we'd like you to know that there is hope, the world is watching and while our Australian doctors have been for the most part viciously silenced, the global community is witnessing.  They see you, they know what you're experiencing and will speak on your behalf.

We wish you the very best Christmas and holiday season possible.  If you're alone, you're not alone, please reach out.


'It takes a village' :-)

Yours in Green, 
Sharon Whiteman | CEO
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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