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Issue January 2020
Dear Lymelighter,
 

Dr Richard Schloeffel OAM has worked with patients with complex and chronic disorders for the past 23 years. His extensive experience and many collaborative efforts have won him recognition and awards by medical colleagues and patients alike. Dr Schloeffel has seen an extraordinary evolution in medicine over his 44 years in practice. Incredibly, menopause was considered a psychiatric disorder when he was in training; just one example of an historical “laziness in the medical profession”. Comparing the stigma Lyme patients endure with that of early HIV patients, he recalls that “HIV patients were abandoned, they weren't even allowed in the medical surgeries of many doctors and there was no science behind that, that was just pure bias and fear.”

Dr Schloeffel warns that Lyme disease is a potentially very serious illness in a small group of people “but it's a catastrophic illness in a much larger group.” There are a few well known cases who suffered a progressive motor neuron like disease resulting in paralysis, weakness that progressed to body failure and death. He says “The medical profession in Australia has a lot to answer for in denying a real illness that is obvious but difficult.”

Addressing the double standard that deems long term antibiotic therapy safe for acne or folliculitis, chronic heart disease where there is infection, chronic pyelonephritis or any other chronic infection; leprosy, TB, or HIV, he sees no reason why Lyme disease should be any different. “The political situation really comes from a lack of scientific rigour and commitment to it.”

He offers advice for doctors who want to help their patients, and for patients he says: “You know…menopause, allergies, HIV, chronic fatigue syndrome, fibromyalgia? They are all real now, they all have a proper diagnostic process. Vector-borne disease will be the same.”

There is so much more in this interview, it’s a must for every Australian Lyme patient and for compassionate doctors who suspect that their patients with chronic fatigue, fibromyalgia MS and autoimmune disease may have unrecognised vector borne disease.
Video, Audio, Transcript

 

LDAA CEO Sharon Whiteman interviews Professor Christian Perronne, MD, PhD, Professor of Infectious and Tropical Diseases at the Faculty of Medicine Paris-Ile de France-Ouest, University of Versailles-St Quentin en Yvelines (UVSQ), Paris-Saclay, France. He is chief of Department of Medicine at the Raymond Poincaré University Hospital in Garches (Hauts-de-Seine), belonging to Assistance Publique – Hôpitaux de Paris, the Greater Paris University Hospitals.

Professor Perronne describes how the science of Lyme disease has been politicised by vested interests in the US, thwarting research globally. Cautiously optimistic that the passing of the Tick Act in the US could result in a commercial boost that encourages some much-needed innovation in testing, Professor Perronne is clear that denying the existence of chronic Lyme disease is a human rights violation, and that attributing Lyme symptoms to psychiatric disorders only prolongs patients' suffering.

Professor Perronne questions why the standard medical diagnostic method of a 1-month trial of treatment is not applied to cases of Lyme disease. By this method, a response to a one-month trial indicates that the treatment approach is valid and should be continued. He considers the trials that conclude that long term antibiotics are ineffective are flawed, based as they are on an expectation of cure after a mere 3 months. He also questions why malaria is routinely diagnosed in the presence of negative blood test results, but Lyme is not?

Patients know that politicisation has dominated Lyme science for far too long. LDAA is grateful for Dr Perronne’s persistence and outspoken defence of the truth, and we know patients will be relieved to know that the world IS watching what happens in Australia.
Video link, Audio link, Transcript


Did you hear?

Fifty patients have entered the Lyme Support Program asking for help to better 'cope' with being a Lyme patient in Australia.  While the specifics are varied the essence is replicated in each person.  Devastating stories of denial, neglect, hopelessness and despair lightened slightly by knowing they're not alone and having the support of professional counsellors or patient advocates.

While everyone is aware that this isn't the solution, the early feedback continues to be positive and heartwarming. "My patient advocate is learning how hard it is to access basic health services due to Lyme disease in my area.  In time things will change for patients suffering from rare diseases and chronic illness etc. Lucky to have her. Thank you Lyme Disease Association of Australia". 

If you're ready to give back to Australian Lyme patients - reach out to us and have a chat.  It's a wonderful team environment and it's making a difference!

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

Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone.” ~ Fred Rogers

http://support.lymedisease.org.au

 


Jennifer Sherer 
Meet the Volunteer

Volunteering for the Lyme Disease Association of Australia [LDAA] over the past eight years has been such a rewarding experience for me.  With so many vulnerable people in our community who are struggling with tick borne illness, I feel passionate to offer assistance in helping find their way to healing.

Managing our social media team has provided me with a whole new set of skills and enabled the LDAA to reach a large audience. With tens of thousands of followers throughout our media platforms, the LDAA have been able to effectively get the message across to those in need as well as provide prevention and awareness information to people throughout Australia.

One of my proudest moments whilst working with the LDAA was gaining the support of thousands of Australians via the LDAA’s postcard campaign, a campaign which was instrumental in securing the 2016 Senate Inquiry into Lyme. Through volunteering, I have gained incredible experience in media [being interviewed for radio and print], worked alongside politicians and liaised with celebrities who have supported the LDAA.  These are opportunities I might not have had if it wasn’t for the LDAA.

I always try to look forward, it’s where the future is. Seeing how far Australia has progressed with the plight of tick-borne illness is encouraging, but we still have a long way to go. If you have ever thought about volunteering, the LDAA family is such a great place to work, you will learn so much and gain new experiences, whilst helping secure a better medical future for all Australians.
 
 


Amina Eastham-Hillier – ND Naturopath

This time around Amina is talking all things Lyme disease. Amina is an experienced Lyme literate naturopath who specialises in testing and treating Lyme disease, Lyme co-infections, mould related illness and chemical sensitivities. Amina is a treasure trove of knowledge in her areas of expertise and today's chat offers a grounded and holistic approach to healing stealth infection and Lyme disease.

Mason Taylor and Amina cover:

  • Lyme Disease
  • Health sovereignty and the importance of taking charge of your own health.
  • The multifaceted approach required to remedy chronic health conditions.
  • Ticks - "the dirty needles of nature".
  • Principals of prevention, tips and tricks you can embody to minimise exposure to Lyme and other pathogenic bacteria.
  • Inflammation and gut health.
  • Stealth viruses and the havoc they can wreak.
  • Living in harmony with nature, and that includes viruses and bacteria.
About Amina Eastham-Hillier
Amina owns a successful multi-modality clinic in Noosa comprising of 18 practitioners. With over 15 years of Naturopathic and 25 years of Nutritional practice, Amina successfully treats chronic illnesses and complex cases. Amina is a Keynote speaker presenting to medical doctors and naturopaths at international conferences, medical documentaries, TV interviews, radio, seminars, webinars, podcasts and workshops. Author of “Lyme Natural” Amina won the award for ‘Australian Practitioner of the year’ in 2017 and is currently finalising her second book (Chronic stealth infections – Filling in the missing pieces).

Listen via itunes   Stitcher  Spotify
 


Missed our Facebook page this month?
 
Read more about what's happening... 
  • Lyme Disease patients are fighting for their lives while researchers squabble 
  • Dr Richard Schloeffel OAM - A Global View - Denial of Lyme "a belief system"
  • Tanya Dupagne - LDAA Ambassador Tanya is one of the few cases that Australian Doctors will believe.
  • Dr Joseph Jemsek - Tide is turning - US Medical Board rescinds restrictions after 13 years
  • Mary Beth Pfeiffer - A Global View - Globally renowned, award-winning investigative journalist exposes the bias and denial in regards to Lyme disease around the world.
  • Put up or shut up! - Christopher Montes, a Board Certified Clinical Psychotherapist and Lyme disease patient has issued a challenge to Dr Zemel et al to prove his longstanding denial of chronic Lyme infection.
  • 3 Year old Emmalee - was bitten by over 150 larval ticks. Larval ticks - an almost invisible threat
  • Amy Down - The Today Show - 'Invisible illness' infecting Australians still not recognised by government.
  • Lyme Support Program - Lyme disease can feel isolating, but there’s no need to go through it on your own. We are here to help.
  • Jenna Luche-Thayer - A Global View - Those who deny patients medical care violate UN-protected Human Rights
  • Dr Steven Harris - A Global View - Lyme disease IS in Australia, and MUST be included as a differential diagnosis in complex chronic disease
  • Dr Robert RowenA Global View - Australian authorities deny infections that are accepted worldwide
  • Prof Christian Perronne - World-renowned Infectious Disease Specialist, consults to French government, How disease politicisation harms 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;
  • 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

 

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

WOW, what a whirlwind holiday period it has been for the LDAA.  Typically we prioritise rest over the Christmas to January period, but not this time.  The late November launch of the Lyme Support Program saw a flurry of support required. Being a pilot, there was a steep learning curve and we simply have to highly acknowledge the volunteer community carers for their patience, flexibility and good spiritedness - Thank you!!  The professional counsellors are blown away by the level of hopelessness in our patient cohort and want to let our community know that "it's an absolute honour to support you."   The Patient Advocates have their work cut out for them, consider it an emerging story.

Some of the LDAA team and patients alike have been seriously affected by the bushfire crisis.  What a heartbreaking and distressing time for all Australians and obviously even more so to those directly in the line of devastation.  Please accept our deepest thoughts and prayers for a graceful recovery through loss and trauma.

Without real action to support those affected by Australian Lyme and associated diseases, the LDAA team chose to reach out to gain the perspective of global experts in the field.  In reviewing the interview series, 'Australian Lyme, a global view', sick Australians can be assured that the world is watching, that you're seen, that you're heard and that you're believed.  With 7 of the 8 planned interviews published, it's impossible to pick a favourite. 

For the direct Australian perspective, make sure you watch/listen to Dr Schloeffel's interview.  The feedback has been awesome with patients letting us know they're sharing with doubting family members and doctors with success.  That's definitely made our day!

With such a complex topic, understandably, they're long (up to 60 min each) and we recognise we're all differently abled in regards to our preferred medium and abilities to watch/listen/read.  You can find the video and audio link of each in the Facebook posts and over the coming fortnight they will also all be found on our site along with the transcripts.

'Working for you, 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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