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Issue September 2019
Dear Lymelighter,

Not seen, not heard: The plight of Lyme disease victims

It’s been almost 4 years since the Senate Inquiry into Lyme in Australia urged the government to put “patients first”. Australian writer and Lyme patient, Leisa Woodman, describes how the situation for patients is worse than ever:

  • Medical practitioners STILL do not treat patients with symptoms following a tick bite
  • Medical practitioners STILL denigrate patients bitten in Australia, and consider them malingerers
  • Patients bitten in overseas endemic areas are STILL not offered clinical diagnosis, testing or treatment.
  • AHPRA is STILL forcing doctors to cease treating their Lyme patients - over 50% (or more) now unable to continue treating their Lyme patients.
  • Centrelink STILL doesn’t accept tick borne illness for support payments
  • There has STILL not been a government public awareness campaign to warn of the dangers of ticks
  • Medical authorities are STILL ignoring the strong clinical evidence of tick bite history, symptomology, blood results, studies and successful treatment cases
  • LDAA estimates over 496,000* Australians are affected by Lyme disease – more cases than breast cancer and 20 times more than the reported cases of HIV/AIDS and multiple sclerosis
  • What’s new?
  • Patients are now being pilloried for using non-pharmaceutical interventions, the only treatment left available to them
  • The incidence of Lyme disease is rising*

💚🙏Thank you for telling it like it is Leisa🙏💚
Thank you to Independent Australia



LDAA Annual Board Election 
 

Become an LDAA member and be eligible to vote 

The annual LDAA board election will be held at the Annual General Meeting on 12 November 2019 and is fast approaching.  In order to vote, self-nominate or be nominated in the election, you will need to be a member of LDAA.  

If you are not already a member, you can apply for membership on the LDAA website.  by submitting your details and agreeing to a Code of Honour.

To participate in the AGM your membership application must be received by midday 13 October 2019.  You can, of course, also apply at any time afterward but won’t be able to participate in this years election.

Any nominations for board members must be received by 25th October 2019.  If you are interested in nominations for the Board please get in touch and we can discuss our election policy with you and talk about what is involved in the role.

LDAA Board members are volunteers who work together to further the interests of patients and carers impacted by Lyme, co-infections or Australian Lyme Disease.  It is challenging and rewarding volunteer work and we’d be delighted to hear from you if you have skills and passion for the role.


Have you been dismissed by a doctor?

'The Feed' want to hear from you!!! 

Over the years patients have told the LDAA of experiences where their pain and symptoms are repeatedly dismissed by doctors and specialists. Well now, SBS show 'The Feed' wants to hear from you!

This is a wonderful opportunity to share your story of being medically abandoned with a wide audience, to have it heard and acknowledged, and to expose the travesty that the Australian medical system is for Lyme patients.

Let's get our stories out there!  Email or FaceBook Message


How many Australian MS patients have been misdiagnosed?

In Turkey, as in Australia, doctors are not trained to recognise Borrelia burgdorferi infections. As a result, few patients are diagnosed and even fewer are treated. Even those who were bitten by a tick in an endemic area are routinely dismissed. Positive blood results from Australian labs are considered false positives, and those from overseas labs are considered inaccurate.

Like Lyme disease, MS is a clinical diagnosis, as there is no biological marker for it. The clinical criteria doctors use to diagnose MS are compatible with Lyme disease, among others. One feature that is found in both MS and chronic Lyme disease is demyelination of nerves. But without this knowledge, doctors do not have the information they need to exclude Lyme disease as a differential diagnosis.

If medical authorities in Australia continue to dismiss Lyme disease as a potential differential diagnosis to MS, they are impeding doctors from making accurate, evidence-based diagnoses. They are potentially responsible for keeping people dependent on medical management. Because, unlike MS, which is medically managed, Lyme disease is a treatable disease.

The Turkish study demonstrates the result of a lack of practitioner education in Lyme diagnosis. How many Australian patients have been diagnosed with MS and persuaded that they must resign themselves to a life of disability, while they actually have Lyme disease and might recover with the right treatment?

The Turkish study can be accessed here.


Rest in Peace Paula Main 💚

Tragically, we lost Lyme patient Paula Main this month after an aneurysm ruptured. Paula was only 41 years old and the beloved wife of Dave and mother of 11-year old twins J and J.

We will never know if it was Lyme that caused the aneurysm, as it has for others. This is the second Lyme patient to die from a bleed on the brain that LDAA knows of this past year. There could be countless more that will never be identified as Lyme-induced. Despite the many studies that identify a causal link, mainstream medicine in this country will never find something that it never looks for.

All of us at LDAA send our deepest sympathies to Dave, the twins and to the many who knew and loved Paula.

You can read Dave’s tribute to Paula on our Facebook page

Rest peacefully Paula 💚💚💚

 

I am a mother of 4 children, 3 of whom are young adults now. And unfortunately, two daughters have Lyme disease. 

Like so many other Australians, my two daughters had to battle to get a diagnosis. They’ve been in and out of hospitals for many years; so many hours in Sydney Children’s Hospital’s clinics: the Immunology clinic, Pain clinic, Rheumatoid clinics and far too many specialists to count. It took years to get a diagnosis of Lyme disease. 

Then began the long difficult period of treatment. My girls went through years of treatment which, of course, made them a lot worse before we saw any improvements.

Seizures became so common in our home we become a little blasé about it. Paralysis, of the legs, back and, for many months, paralysis in the throat caused such difficulties that one daughter was unable to speak. Pain, fatigue, brain fog, heart problems, anxiety, lung problems that caused struggles with breathing etc etc., the list goes on and on. 

The girls needed Intravenous antibiotics which meant nurses coming daily and staying for long periods. So many emergency dashes to the ER. We lived in a state of crisis for over ten years. 

When we moved to the Netherlands for my husband’s work, we took advantage of the better treatment that’s available in Europe.  We attended tick borne disease clinics in Germany and the Czech Republic, and got further treatments in the Netherlands. 

Many doctors in Europe asked how an advanced country like Australia could let a little girl stay so sick.

The girls have been up and down; 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 the many Lyme patients in this country. 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; whole family are affected, giving up careers, selling their family homes to care for their loved ones. 

I have a passion to use my past experience and skills as a crisis counsellor to aid and give some comfort to Lyme patients.

"The LDAA would like to offer their gratitude for Gabrielle's many, many years of service to our cause. Thank you!"


 
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;
  • 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

FREE workshop, Sunshine Coast QLD
Introduction to Quantum Healing Hypnosis Technique is an experiential seminar where Peter Rule (Naturopath, Herbalist, Nutritionist, Hypnotherapist & Wellness Coach) will give a brief description of this type of hypnosis which was developed by regression hypnosis pioneer Dolores Cannon USA.

Come along to our FREE ‘Wellness Wednesday’ Information night, where Peter Rule will guide you on an experiential journey to connect more with the right side of brain, explore past lives, future lives and connect with your guardian.

  • When: 6.15pm arrival for a 6.30pm start, Wednesday 30 October 2019
  • Where: Noosa Holistic Health, 35 Mary St Noosaville QLD
  • Cost: FREE
  • What to bring: Something comfortable to lie on (ie: yoga mat, blanket) and a notebook and pen
  • More Information. Bookings are essential, phone: 07 5449 7088 to secure your spot!

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 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


Our heartfelt prayers for Dr Greg Emerson who was recently suspended from practising medicine by AHPRA.  To our knowledge there are no Lyme-treating doctors who haven't experienced the intrusion of AHPRA into their practice.  
 
At the LDAA we are most concerned about everyone, but particularly our most sick and vulnerable.  RUOK Day was an awesome opportunity to practise what we are about – reaching out to those in need.  We were especially inspired by Pooh & Piglet, this final segment really captures the core essence of support.

"We're sitting here with you," said Pooh, "because we are your friends. And true friends don't care if someone is feeling sad, or alone, or not much fun to be around at all. True friends are there for you anyway. And so here we are." "Oh", said Eeyore. "Oh."

And the three of them sat there in silence, and while Pooh and Piglet said nothing at all; somehow, almost imperceptibly, Eeyore started to feel a very tiny little bit better.  Because Pooh and Piglet were there.


If you are someone who likes to help others, please consider joining our volunteer team, There are all kinds of ways you can make a difference.

Speaking of action, there has been no further progress on either of the Department of Health contracts - DSCATT Clinical Pathway and DSCATT Educational Materials. The clock's ticking.  The LDAA will continue to engage, act and be in your corner.  When situations seem stalled there's often breakthrough right around the corner.

To complete, we'd like to thank and congratulate everyone who took action to submit to the Medical Board of Australia Public Consultation.  WOW, 12,000 submissions strongly supporting patient right of choice to integrative medical services!  Well done!  An update from Your Health Your Choice. #PeoplePower

'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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