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Issue November 2019
Dear Lymelighter,
 

Queensland Tick Typhus is endemic in parts of Australia 

Lyme patients know of Rickettsia as a potential co-infection of Lyme disease. Like the rest of the many tick-borne pathogens, Rickettsia bacteria are found in Australia and across the globe. Australian tick typhus, or Queensland tick typhus, is a commonly encountered Rickettsial infection here. In tropical Australia, scrub typhus and spotted fever are the dominant Rickettsial infections, and they are increasing in incidence. These serious infections may be fatal if left undiagnosed and untreated. And the sooner they are diagnosed, the easier they are to treat with antibiotics.

The Australian Journal of General Practice encourages doctors to treat patients with symptoms who have been in endemic areas (the entire east coast of Australia, down to Wilson’s Prom) “with or without patient knowledge of a tick bite.”

This informative blogpost by the German BCA Clinic, urges people to see a doctor and highlights the differences between Lyme disease and Rickettsia infection. 


 


The Lyme Disease Association of Australia is pleased to share the launch of our pilot Lyme Support Program.

Our Program is designed to provide much-needed support and resources to Australians impacted by Lyme disease. Lyme disease is not something you need to deal with on your own. If you need support, we are here to help. http://support.lymedisease.org.au/

Being what we think might be a world-first pilot, we'll learn and correct as we go, but the early feedback is heart-warming:

"Many times I have felt like I'm going over the cliff, I've reached out for help to Life line etc. and it has always helped me to take a step back from that cliff. The ability to be able to talk to someone who has a lived experience of Lyme makes it like many steps back off the cliff."

"Thankyou, and my heartfelt thanks to the work and effort from the LDAA to make this all happen."

"Thank you for efforts sorry I am difficult to deal with. Usually I can deal with problems as they arise myself but just too much trauma at once on no sleep for months. Not as resiliant as usual. Thank you for your understanding."


Tanya has spent the past 15 years running camp and youth activity programs for over 130,000 children and young people throughout the world and her programs have been recognised at State, National and International level.

Tanya says her experience with Lyme disease is a ‘painful nightmare’ that doesn’t go away when she wakes. Even though she acquired Lyme in the US, an endemic country, she struggled for years to obtain a diagnosis in Australia. That was only the beginning of her frustration, as she soon realised the complexities of the disease's status in her home country. The average time to diagnosis for patients in Australia is 10 years, and that delay impedes patient’s options for a full recovery.

Tanya demands urgent action for Lyme patients in Australia. "Patients aren't being put first," she said. "We need change for people like me. Not in 5 years’ time, not in 10 years’ time, now, RIGHT NOW."

Full story.

 

2019-20 LDAA Board Members Announced 

LDAA welcomes a new member to the Board

We are pleased to announce the 2019-20 LDAA Office Bearers and Board Members, voted in by LDAA members on the 12th November at the 2019 Annual General Meeting:  

Sharon Whiteman - CEO
Marie Huttley-Jackson - President
Rebecca Vary - Vice-President
Kathryn MacDonald - Treasurer 
Ann-Maree van Dalen - Secretary 
Jennifer Sherer - Board Member
Maree Kratzer - Board Member


The LDAA welcomes new member, Kathryn MacDonald to the team.  

Kathryn's niece is recovering from Lyme disease and is well aware of the struggles Australian patients and their families face on a daily basis. For this reason Kathryn wishes to contribute to establishing the support and recognition patients need. Kathryn has a Bachelor of Business and has worked across various industries in accounting since 1993. She will be a great asset as Treasurer for the LDAA.

Our sincere gratitude is offered to our continuing board members, you're a stellar team!


We have a winner!!!  💚🍀🍀🍀💚

Community Lottery was drawn last month and LDAA volunteer, Lily, was the lucky winner of a Drummond Golf Pack! The pack included a set of golf clubs and a bunch of accessories worth a total of $1,167!  Lily was very excited about the win...

"I feel so lucky to have won! I've been sick for 14 years now and it's been a tough road. It feels great to have some good luck come around. The last time I won something was a skate board ten years ago. I'm not sure what the universe is trying to tell me, sending me these random prizes. I seem to have a strange talent for winning them. Next time the universe sends me a bit of luck I hope it will help all the Lymies out there. Some big changes to our medical system or some groundbreaking research would be nice. Fingers crossed!"  -  Lily

We are happy to have a winner amongst out supporters. A big THANK YOU to everyone who helped raise funds for the Lyme Disease Association of Australia. It is with your support that we continue to fight for recognition of this devastating illness.

We wish you all the best of luck in next years draw!  💚🍀🍀🍀💚


Brad contracted Lyme like illness way back in 1999 when he was 19 and had noticed some unusual neurological changes that appeared virtually overnight. After seeing countless Doctors with very vague diagnosis and labels of being a “difficult case”, he accepted that his symptoms were auto-immune in nature and went on to continue his fully functional life.
It wasn’t until a decade later that the disease had progressed and new symptoms had developed including Chronic Fatigue Syndrome like symptoms which forced him to resign from full time employment.

Brad’s worldwide (Google) search for answers over this decade of growing symptoms constantly resulted in the term “Lyme Disease” appearing over and over - however a search within Australia would simply result in an NSW Health website warning that assured that Lyme Disease didn’t exist in Australia. Brad had a history of rodent and cat bites and overseas travel but had no recollection of ever seeing a tick so wasn’t sure if this was linked. His gut feeling told him otherwise.

Desperate for answers and feeling very isolated, Brad travelled to a rural country town in NSW that had a Doctor who specialised in diagnosing and treating Lyme Disease. He was very much of the belief that the condition did in fact exist in Australia and many hosts were able to transmit the bacterial infection to humans.

Brad’s blood was sent to a lab in California USA where it showed antibody activity to Borrelia and a highly suppressed immune system. Brad felt this enormous weight lift off his shoulders, finally some REAL answers!

Within 3 months of starting intensive antibiotic therapy, diet changes and immune support with herbs Brad noticed an immediate improvement which confirmed his diagnosis and previous gut feeling. Continuation of treatment has resulted in continual improvement. While once he was completely bed-bound, he now drives long distances, travels and works.

Brad has volunteered for the Lyme Disease Association of Australia since 2012. His caring and helping nature combined with his own battle with Lyme like illness attracted him to the organisation from a very early stage of his diagnosis. He helps out with a variety of tasks which include website maintenance, posting of patient test kits for overseas laboratories, helping with the accounting side of the charity, general admin, and providing some positivity and humour within the organisation.


ARE YOU DOING SOME EARLY CHRISTMAS SHOPPING ?

You can help the LDAA to fundraise from your shopping and it will NOT cost you anything extra.  Black Friday (29th November) sales extend over this entire weekend, with plenty of fantastic discounts still available at 100s of stores. It is a great opportunity to get some great deals and support  Lyme disease association of Australia at the same time - FOR FREE at over 650 retailers.

The fundraising opportunity continues all year round, but Black Friday sales this weekend are a good opportunity to get started. Supermarkets, booksellers, fashion, chemists, they are all registered for this fundraising initiative so there is something for everybody. 

I couldn’t believe that my weekly online shop at Woolworths resulted in a $10 donation to the LDAA through shopnate, I am so happy I registered with Shopnate so that the LDAA could benefit.” Ellen WA 

Here’s how you can help
Join to support Lyme disease association of Australia from here:
https://shopnate.app.link/nMpnmLvYCO
 

 


Missed our Facebook page this month?
 
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


Thank you Catherine O'Neill and family

On November 18th AVEO retirement village in Albany Creek, Brisbane held an educational fundraiser for the LDAA.  Catherine's parents and AVEO residents AVEO residents, Michael and Mary, want passionately to raise awareness about Lyme disease in Australia. Their daughter Catherine went from healthy young mother and business woman to frail and chronically ill after being bitten by a tick in her back yard in outer suburban Brisbane. She immediately became acutely ill. Pain, numbness and twitching very quickly progressed to difficulty with both swallowing and breathing and Catherine had to be admitted into Intensive Care. Sadly, as is the case for far too many, the excellent medical care ended there.

Witnessing Catherine’s suffering over these past 6 years has inevitably taken its toll on Michael and Mary.  The LDAA and the whole Lyme community in Australia know from personal experience that patients like Catherine across this country are being left to fend for themselves without medical care. Michael and Mary are speaking out to help spare other individuals and families this traumatic experience.

Following a beautiful morning tea, LDAA CEO Sharon Whiteman did a brief educational talk followed by raffles, door prizes and fun.  Along with the delivery of life-saving education, more than $1000 was raised - thank you Michael and Mary and the AVEO community!

Left to right:  Sharon Whiteman, Kath Cook, Catherine O'Neill and mum Mary

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!
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


Following our AGM we'd like to offer our sincere gratitude to Tanya Kerr, our outgoing Treasurer.  Tanya has no lived experience or connection to Lyme disease and supported the LDAA for the past 2.5 years out of the goodness of her heart. Extending that generosity, Tanya, a busy mum of two will continue on volunteering in the financial support role but with more manageable hours and responsibilities - above and beyond Tanya!  Thank you!

While the Lyme Support Program wasn't our first choice of funding out of our 2019 Pre-Budget Submission, we are so grateful to be able to offer extended emotional and psychological support to our well deserving patient community.  If you missed the launch notice, learn more. We could not do this without the gracious and giving spirit of our Lyme community.  These community carer volunteers are simply priceless – thank you from the bottom of the LDAA hearts!

You will have seen our past reports about the Department of Health tenders for a clinical pathway and tick education.  The draft documents were delivered this month and fall dramatically short of best practices and providing what's urgently needed for sick Australians.  We are responding on your behalf alongside the many Lyme groups around the country.  United we stand.

'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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