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Issue August 2019
Dear Lymelighter,
 

Australians with Lyme and associated infections have a human right to healthcare

Australian Lyme patients and their doctors have been seriously impacted by AHPRA’s punitive actions taken against doctors.  We have seen a devastating loss of doctors experienced in treating patients with Lyme disease. As such, since January 2018 the LDAA has had to advise new patients to seek medical care overseas.

Surprisingly, many of the ‘complaints’ made against doctors treating patients with Lyme disease have been vexatious and lacking in supporting evidence. Despite this, each complaint results in tedious hours of work plus a massive financial investment by our doctors in order to defend themselves.

On the other hand, many thousands of patients have written to us and submitted their appalling stories of discrimination and their experiences of denial of medical care by doctors who refuse to treat them due to their diagnosis. Despite this, few patients have ever submitted a complaint to AHPRA, thinking it would be a very detailed and difficult process.

Well, we checked and it is not a difficult process at all.  
If you have a story of clear denial of appropriate medical care and suffer discrimination because you have a tick-borne disease diagnosis, you can help to change this situation.  It's easy to submit a complaint to AHPRA: 

1) Online form - https://ahpraorg.secure.force.com/notification
2) Download and complete pdf - submit to notifications@ahpra.gov.au
 
TIPS

  • Be firm but factual 
  • Avoid emotive language 
  • Include dates, times and statements
  • Keep records of your complaint

**if you think that writing your complaint may stress or re-traumatise you, please put your well-being first. If you decide you can manage it, please make sure you have the support you need. Let us know if we can support you. 

And, if you decide to lodge a complaint and would like to share it with us, you can simply send your completed PDF form to us when you send it to AHPRA. Or email us a copy of what you put on the online form. Click: www.lymedisease.org.au/contact-us and choose 'Other' from dropdown list.

This situation must change... it is time to act to level the playing field. 


 

Lyme-Ed now counts towards Continuing Professional Development for naturopaths

Lyme-Ed has been approved and allocated 20 points towards continuing professional development (CPD) by the Australian Register of Naturopaths and Herbalists (ARONAH).
 
With over 20 hours of valuable online content, practitioners can learn about how and why to adopt an integrative approach to Lyme. The training covers 10 modules plus access to supporting files and resources. The practitioner’s course has the option of a Continuing Professional Development (CPD) stream. A completion certificate is available from LDAA upon request.
 
A separate course for patients is designed to support them in being more fully informed in their recovery journey.
 
The training makes it possible for practitioners with patients sick after a tick bite to build knowledge in diagnosing and treating Lyme and Lyme-like illness in Australia. The course addresses nuances often faced like: what to do if antibiotics stop working, why supporting the body during treatment is so crucial, and the 10 key factors that can hinder recovery.
 
LDAA is acutely aware of the overwhelming need for patients to receive knowledgeable treatment in Australia and the lack of available training material. So, we partnered with Dr Nicola Ducharme to provide this world class online training program.  Practitioners also have the option of ongoing support from Dr Nicola to assist in treating their patients.
 
Dr Nicola Ducharme is an Australian-born, US-based Naturopathic doctor who completed her Ph.D. in naturopathy at the prestigious Bastyr University in Seattle.  She has written four books on Lyme disease and treated Lyme and Lyme-like patients in both Australia and the USA for many years.  She also regularly attends the International Lyme and Associated Diseases Society (ILADS) conferences to ensure her knowledge is current and world class.
 
You can enrol in Lyme-Ed for US$397 for practitioners or US$197 for patients.


Carly Ellis's Family Ask For More Research 

Another life tragically lost 💚

39 year old UK woman Carly Ellis loved to travel. In 2008 she came to Australia and loved it so much she stayed for nearly a year. She didn’t think much of it when she was bitten by a tick on Rottnest Island and developed the classic bullseye rash.

It was back home in the UK after a series of health crises she tested positive for Lyme disease. Although only a few months after the tick bite, the prescribed treatment of two weeks of antibiotics was inadequate to return her to health.

A further 6 months of antibiotics didn't prevent 8 more years of infections and serious illness, including sepsis and pneumonia. Tragically, 8 years after she was infected with Lyme disease by an Australian tick bite, Carly died in her sleep.

Now her parents, Ian & Cheryl Ellis and family want to share some of Carly’s story in support of research into Lyme disease. They don’t want others to suffer as Carly did. They are inviting donations in the UK to the Caudwell Lyme Charity in Carly’s memory.

You can support Australian Lyme disease advocacy, education, research & awareness in memory of Carly here: https://www.lymedisease.org.au/help/ 

Rest in peace at last Carly 💚
 


Every year at the LDAA we are contacted by hundreds of sick people or the loved ones of sick people, searching for support and information on how to access diagnosis and treatment options. The situation is Australia is dire but we do our best to help these people. 

Many people send the LDAA messages of gratitude and relief for the help they receive. Below is a recent message of thanks we found particular touching.

From the father of a child with Lyme disease...

"Lyme Disease Association of Australia thank you! Today, thanks to your help, marks the day we finally have an explanation to the last 9 months my 11 year old son has had to endure. A journey no individual or family should have to travel in a country such as Australia. Your association gave us some clarity and direction in a time we needed it most. 
 
We will be forever grateful........"

 



LDAA 2019 Raffle! –  Only 2 weeks to go!

TICKETS ONLY $2 !! BUY ONLINE HERE!!

Funds raised by the annual People’s Choice Community lottery makes a HUGE difference to us at the LDAA. Help us continue supporting our vulnerable Lyme community, and continue fighting for recognition for Lyme disease in Australia. 

What are you waiting for......... just $2 to help us make a real difference 💚

Buy online now (deadline August 30th)
Buy tickets online here, it's easy! 💚 Spread the word!
100’s of prizes up for grabs, including 2 cars, a diamond ring, a $20,000 Harvey Norman house package and much more! See the full prize list here.

Good luck!! 💚💚💚
 



Deadline for Comments on IDSA Guidelines Extended

IDSA rethinks its stonewalling 

Just hours before the Infectious Diseases Association of America’s (IDSA) cut-off for commenting on its new draft guidelines, it extended its deadline for a further month. In addition, it backed down from its prior refusal to make reading the document easier and more in line with general practice for such releases.

Volunteer Lyme activist, Lucy Barnes emailed the IDSA, the American Academy of Neurology (AAN), and the American College of Rheumatology (ACR) (the three organisations sponsoring the guidelines.), expressing her frustration.

She explained that the “daunting task” of reading and commenting was “unfair to all interested parties, especially the disabled.”

In their response the IDSA said that ”The deadline to submit comments is now Sept. 9, 2019. In addition to the deadline extension, the format of the draft guidelines posted on the public comment website has been changed to allow readers to search, download and print the document, ensuring that anyone interested in submitting comments is able to access the draft guidelines and have appropriate time to review and comment.”

The new deadline gives time for more patients and volunteer groups to comment meaningfully on the content of the guidelines which are substantially unimproved and are woefully inadequate to address the rising incidence of tick borne disease worldwide.

Find out more...


I am a Mother of 4 children, 3 are young adults now. Unfortunately, two of my daughters have Lyme Disease. Like so many other Australians my daughters have battled with getting diagnosis for many years, in and out of hospitals. So many hours in Sydney children’s hospitals; the Immunology clinic, Pain clinic, Rheumatoid clinics, and far too many specialists to count. It took years getting to a Lyme disease diagnosis.

Then the difficulty started in getting treatment for my girls. Years of treatment which of course made them a lot worse before we saw any improvements. Seizures got so common in our home we would just become a little too blasé. Paralysis in the legs and back, and many months paralysis in the throat causing such difficulties that one daughter was unable to speak. Pain, fatigue, brain fog, heart problems, anxiety, lung problems causing struggles with breathing etc etc the list goes on. The girls needed intravenous antibiotics with nurses coming daily for long periods. So many emergencies, dashes to the ER. We were living in a state of crisis for over ten years. 

We moved to the Netherlands for my husband’s work and we took advantage of getting better treatment in Europe for them.  We attended tick borne clinics in Germany and the Czech Republic, and got further treatments in the Netherlands. Many doctors in Europe asked how an advance country like Australia could let a little girl be so sick. 

They have been up and down and life with Lyme is always a challenge, but things are looking brighter for them both. My younger daughter was in a wheelchair for around 6 years and is currently not needing it. 

I feel so strongly that we have to speak up and be advocates for so many other Lyme patients. I have been in touch with many people from all walks of life in Australia who are suffering from this horrid disease. It not only effects the sick person but whole families are affected by giving up careers and selling their family homes to care for their loved ones. I am passionate to use my past experience and skills as a crisis counsellor to offer some comfort to Lyme patients.
 



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;
  • 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 Noticeboard

Dr Nicola Ducharme, ND
Upcoming webinar, “Updates in Lyme Disease Treatment With Dr. Nicola,” where I review 3 innovative modalities that are showing great promise and/or positive results in the treatment of chronic Lyme disease.

The webinar will take place Wednesday, August 21 at 5:00pm PST, via Zoom. (10am EST Thursday 22nd August)
You can register here.

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

*Announcing a Pilot Study*
EFT Pilot Study for People Living with a Lyme-like Illness

WHY A PILOT STUDY WITH EFT? 
I’ve been recovering from Lyme-like illness for the last 6 years and have used a number of tools and techniques to support my recovery.  EFT has been a supportive wellness tool that I’ve used to ‘tap into’ a wellness state of mind and support my emotions, thoughts and beliefs.  

"We have used EFT and other forms of neurofeedback in the past
– it can be helpful.
" ~ Dr Richard Horowitz

There is no cost to patients, learn more:
Register your initial interest via the website by Sunday 28th August.
https://larimarwellbeing.com/eft-lyme-disease-pilot-study/


 

 

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 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!
  4. 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.
  5. Counselling Support | Do you have the lived experience of Lyme and want to help others?  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 Committee

 
Can you help?  Ticket sales close August 30th.  We are so privileged to be a part of the Community Choice 2019 Community Lottery. The work of People's Choice Credit Unions in offering raffles for small charities like us is priceless.  They do all the work and we just have to link arms and share the good news with those who want action for Australian Lyme disease.  We're on the final sprint to the August deadline.  While we recognise that the majority of our community are some of the most financially stressed in the country, it would be GREATLY appreciated if you could encourage your friends and family to go in the draw for some AMAZING prizes – only $20 for a booklet of 10!

We remain actively engaged with the patient community and the consultants successful in securing the two current government tenders.  Consistently we find that once any individual dives deeply into our situation here in Australia, they are astounded by the complexities.  We are dedicated to doing our best in partnership with the Department of Health to ensure the best outcomes from these tenders for current and future Australian Lyme patients.

You will note that community enquiries have lead us to highlight the steps for making a complaint to AHPRA about your experience of being denied medical care.  If you feel that any medical practitioner has denied you care based on the 'stigma' of Lyme disease in Australia, please review the information in this email.  With new awareness in Australia in regards to protecting human rights, including the right to healthcare, it is important that you know what's available to you.  Understandably, most people think it's a complex process to submit a complaint but we've discovered it's not!  Some complaints about our dedicated Lyme-treating doctors have only been a paragraph or two.  Do your best to be factual, detailed yet succinct and non-defamatory.  Let us know if we can help.

'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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