Lyme Disease Association of Australia

By on Feb 24, 2009 in Geographic Incidence

Lyme Disease Association of Australia Inc.
An official Lyme Disease Association of Australia has been launched.  Our mission:
1.    To raise awareness of Lyme disease and other tick-borne Illness in Australia. 
2.    Facilitate better testing and treatment.
3.    Educate doctors and other health professionals about Lyme in Australia.
4.    Use the media to alert the public about Lyme in Australia.
5.    Collate personal stories which will bring pressure to bear on the Health Department who currently claim there is no Lyme in Australia.
6.    Highlight the probability that Lyme may be the actual cause of many serious health problems including, Parkinson ’s disease, ALS, (Lou Gehrig’s Disease), Motor Neurone Disease, Multiple Sclerosis, Fibromyalgia and M.E./Chronic fatigue Syndrome. 
7.    Invite professional people to support us and join this association. 
Our founder, Mualla Akinci is extremely capable and has the following qualifications:
A PhD in neuro-pharmacology, Masters in hematology and honors in Immunology and has a pharmacy practice in Redfern.  She was a post doctoral fellow at the Garvan Institute of Medical Research and worked in collaboration with scientists at Walter and Eliza Hall Institute in Melbourne, and at the Peter McCallum Cancer institute.  Prior to her husband contracting Lyme in 2007, he worked in the film industry and has many contacts in film and television.
We will enhance the work already done by T.A.G.S. and others.  We believe that if we all pull together we can bring huge improvements to the current Lyme situation in Australia.
We invite all Australian Lyme patients, friends and family of Lyme patients, doctors and health professionals to join this wonderful group and add your voice to publicizing the reality of Lyme in Australia.
As a registered charity, there will be a small fee of perhaps $5 for pensioners and $10-15 per annum for those on regular incomes to cover our costs.   We will also accept donations which will be tax deductable.
What we need.
1.    Someone who can set up a webpage for the association.
2.    A President.
3.    Vice President.
4.    Secretary.
5.    Treasurer.
We welcome all suggestions and look forward to your comments.  Please forward this email to other Lyme patients and Lyme groups.
Rosemary Trudeau.
www.au.groups.yahoo.com/group/LymeOz

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  • Alana

    Can anyone help with info on Lyme Diseaes in Australia…there is no help from doctors etc….does anyone know a doc or researcher that may be able to help me?

  • Lesley

    Hi Alana
    A good place to find up to date information on Lyme and other tick-borne diseases is on the International Lyme and Associated Diseases (ILADS) website. It’s a US organisation, but it can also provide information regarding Lyme-literate MDs in other countries. Dr Burrascano’s ‘Diagnostic Hints and Treatment Guidleines for Lyme and Other Tick-Borne Diseases (2008)’ – also on the ILADS site – is an excellent source of information for patients and doctors alike. You could also join Eurolyme, which is a Yahoo group – you’ll find lots of support and information there from people who have Lyme.
    It’s great to hear awareness of these diseases is being raised in Australia. I’m in the UK and have been ill with Lyme for years, repeatedly undiagnosed and misdiagnosed by the NHS. Fortunately I found a Lyme-literate MD in the UK last year, and I’m finally getting the right type and length of antibiotic treatment.

  • T

    Alana could u please post any doctors if u find them, i will do the same.

  • dagmar

    hi……where are the contact details…. would love to join the org. pls email me

  • http://www.lymegreenaustralia.blogspot.com Lou

    Ask at AussieLyme yahoo group or LymeOz as members there are organising the LDAA. I have links on my site to find it easily. http://www.lymegreenaustralia.blogspot.com
    They have a Dr list also if you join the chat.

  • http://rjso4646@yahoo.com.au Sandra Smith

    sorry for your pain Mualla my nephew has been suffering from a tick bite since 1997 at Coffs Harbour he is the same age as your husband My nephew is very ill and we are now hopeful that with your involvement Governments and the medical proffession may become more active in helping suffers of lyme disease get the treatment they deserve. for your information Graham Ross Gardening Clinic did a talk on Lyme in Australia & has cases that he knows of himself having being bitten by ticks although he received the antibiotic treatment because he insisted from his GP. Others have not because of Government policy. Interesting he says that he does not trust the Government to do anything as he has personal experience You may find this podcast on his website.
    insofar as Employers Mutual sending Karl to Dr Slezak – ive worked in that workers compensation arena and for years insurance claim officers have send their work to Dr Slezak as an insurance company doctor, he is an occupational physcian with no qualifcations regarding Lyme, that we are aware of.
    There are also WorkCover guidelines that state the Insurer must firstly ask Karl’s nominated treating doctor for the medical information and if they do not get a reply within 10 days IT IS ONLY THEN they can refer onto an Independent Medical Examination , but only with the speciality of that doctor being the same as the workers treating doctor.
    Has the WorkCover Agent/Insurance Company complied with those WorkCover guidelines???
    If I can assist in any way please do not hesitate to ask.
    regards Sandra

  • http://www.lymedisease.org.au/ Melitta Marr

    Hi Brian and others,

    Thank you for posting information about the Lyme Disease Association of Australia on your website – we really appreciate the exposure so we can hopefully help others with Lyme Disease in Australia. The information you have posted has been updated, so I will contact you personally and send the latest information in relation to the LDAA.

    The web address is http://www.lymedisease.org.au

    We are still looking for a secretary and treassurer if anyone is interested in helping out.

    We are organising a fundraiser in September as well, so please visit the website for further information or for anything else in relation to Lyme disease in Australia

    Kindest regards,
    Melitta (vice president LDAA)

  • Linda

    Hello people I am very relieved and happy to have someone I can talk with as I have just found out this year after about 18 years that I have Lymes disease I would really be happy to talk with people wit Lindah the same disease to hear what treatment they are receiving and to know their experiences. Please make contact it has been a very lonely experience for me as I suppose for you. Thank you

  • Tina

    Hi i am a Chronic Lymes sufferer and really have had a gut full.I was diagnosed 9 years ago as i became very ill with some horrid symptons.I was ill for a year before i found a doc who found out what i had.She was shocked as i had not been outside Aussy.I got the tick bite on the Sunshine Coast Queensland.I have lost everything through this disease.I do not know who i am anymore…I have tryed everything to get rid of it but nothing works.Lymes takes over my whole life.I remember my doc telling me the Health Department didnt want to know about it…I have lost everything work ect.I now live on a Disability Pension.I really feel like i am a nothing…I have noone to talk to as people dont understand..
    I just try to stay POSITIVE….
    But Hey LIFE GOES ON….Tina
    If anyone would like to contact me feel free love to hear from you..

  • Karen

    Hi all – have been sick for nearly two years and began with Bells Palsy early last year. As Tina said – life goes on; and the need to stay positive is immense – especially as people dont understand. Anyhoos – Just wanted to share with all the details of a doctor here in Australia who is doing/working with Lyme patients. I just travelled from QLD to NSW to meet him. If you search for Dr Peter Mayne; you will find his details and he has a page set up for Lyme patients. He is very honest/forthright and helpful. Goodluck all.

  • robert

    Hi folks,
    I got lymes about four years ago, had the antibiotics then but recently I get tingles and twitches,my blood sugar is creeping up and I get this funny jaw thing going on to the left of the jaw and some myalgia is it still in my system?

  • Denise

    Hi,

    I don’t suffer from Lyme but another chronic disease which may have a bacterial cause, but which is currently treated as an autoimmune illness. I have a friend who has been query sarcoidosis/ query Lyme for a couple of years now getting nowhere with doctors. I am horrified at the denial of the Health Department in the face of people getting a positive diagnosis overseas. I thought sarcies had a fight on their hands, but you guys have a real uphill battle. You have won me over. I would gladly support your cause. My disease has also removed my livelihood and hobbies from me – so I know what you are going through. Doctors are just as ignorant about my illness believing most patients recover in two years. I will certainly pay for membership.

    Denise

  • rodney

    This how I describe it  living in hell  the worst part of it is that   the government does not believe it   how come every one that has the deasease in Australia  had been bitten by ticks  I worked in Queensland  Currumbin  health retreat   no one ever told me about  catching disease there
    When I left couple months later   I felt  strange then I got  flu   then wham big time  encephalitis   neurological symptoms had it now for 13 years  I have seen so many doctors  one  diagnoses  telling me I have cfc  I have no fatigue  what a joke  top infectious disease  professor   in syd Australia  so many doctors now  costing the government a fortune and myself…. if only one doctor had a brain to put this mystery  together    um worked in rain forest  and  bitten by ticks  neurological symptoms  what could that be  also had every test  nothing  sound familiar  I’m no doctors  after all the years thinking I was mad  decided to internet search   and I knew straight away what it was  but believe it or not I asked my gp  could I have lyme  of course  not   may be your depressed  well those pills did not work…….  after just having a gut feeling   I sent my blood to igenex   and a  positive  I have all the symptoms    positive igg exposer  been bitten by ticks  and they still don’t believe me  I still can’t get treatment  as  the 3 doctors we have in Australia are busy with the hundreds  and there will be hundreds more  those of you that think you have chronic fatigue be very weary  miss diagnoses   I would get tested  if I was you  I thought I was safe working in that job now  my life has been a living hell  none of my family history have  illnesses    so what do I have  wake up Australia lyme has hitched a ride on a bird  as most diseases have done   we are an island   but the air   is travelled  …………………………….i am now on   many vitamin’s   for the neurological symptoms   awaiting some doctor to help me  ………………………I wish you doctors could have it  for one day  ………………….try 13 years   when all I need is antibiotics  the most pain full thing is the doctors miss diagnoses  from what I’m reading on the net there are infected people every were  what are we waiting for   lets  site back and laugh at all of us that are suffering   ye its real funny  ………………………is there any infections disease doctors in Australia that  about Australian diseases    it’s not in a book that’s for Shaw