ABOUT Lyme Australia Recognition & Awareness (LARA)
Lyme Australia Recognition & Awareness (LARA) website was originally "published" online on the 7th of July 2012.
The complementary Lyme Australia Recognition and Awareness Facebook page was started on 18th January 2013.
The complementary Lyme Australia Recognition and Awareness Facebook page was started on 18th January 2013.
Aims & Work of Lyme Australia Recognition & Awareness
1. To highlight the need for the recognition and awareness of Lyme Borreliosis in Australia and Globally
2. To provide scientific information to the Australian Health Departments about the urgent necessity for adequate research into the existence of the Borrelia species responsible for Lyme disease/ Borreliosis in Australia.
3. To provide basic, "easy to understand" information on Lyme disease, how it is transmitted and how it can be associated to so many various health problems.
4. To Provide Lyme Patients a place for a "voice" to tell their stories, to share their artistic talents and provide access to treatment and research forums.
5. To discuss the various testing methods and treatment options for Lyme / Borreliosis
These Aims, and how we have worked on them are expanded on below:
2. To provide scientific information to the Australian Health Departments about the urgent necessity for adequate research into the existence of the Borrelia species responsible for Lyme disease/ Borreliosis in Australia.
3. To provide basic, "easy to understand" information on Lyme disease, how it is transmitted and how it can be associated to so many various health problems.
4. To Provide Lyme Patients a place for a "voice" to tell their stories, to share their artistic talents and provide access to treatment and research forums.
5. To discuss the various testing methods and treatment options for Lyme / Borreliosis
These Aims, and how we have worked on them are expanded on below:
1. To highlight the need for the recognition and awareness of Lyme Borreliosis in Australia and Globally
** Lyme Borreliosis (LB) is a multi-systemic inflammatory disease resulting from an infection from spirochete bacteria of the Borrelia family. When the infection is detected and treated early, the prognosis for a full recovery is excellent. Unfortunately, due to the various ways the illness can manifest, the lack of definitive laboratory tests for diagnosis and more importantly the overall lack of awareness surrounding Lyme Borreliosis, many people may go undiagnosed for long periods of time, rendering the treatment and recovery process much more complicated. For this reason, recognition and awareness is paramount to early detection and fast and effective treatment.
** Lyme Borreliosis (LB) is a multi-systemic inflammatory disease resulting from an infection from spirochete bacteria of the Borrelia family. When the infection is detected and treated early, the prognosis for a full recovery is excellent. Unfortunately, due to the various ways the illness can manifest, the lack of definitive laboratory tests for diagnosis and more importantly the overall lack of awareness surrounding Lyme Borreliosis, many people may go undiagnosed for long periods of time, rendering the treatment and recovery process much more complicated. For this reason, recognition and awareness is paramount to early detection and fast and effective treatment.
Recognition and Awareness Events Karen / LARA has been involved in / Initiated
Awareness Events and Protests:
** Attended first Lyme Protest in Australia (organised by Danielle) outside NSW Health in September 2012
** Co-Organised the Lyme Protest outside QLD Health in Brisbane with Rachael Robins in November 2012
** Signed Australia up for Participation in the Inaugural Worldwide Lyme Protest in 2013 and developed a website to collate information about all the events around Australia, as well as information about the various countries participating.
Worldwide Lyme Protest (Project) Australia Website : This link will take you to the 2013 Worldwide Lyme Protest (WWLP) Australian Events Round-up - which also gives a shout out to Janice Foster (who joined as National co-coordinator with myself (Karen Smith) in November 2012), Sharon Whiteman / Lyme Disease Association Australia (LDAA) (who joined the WWLP - Australia team in March 2013 after Janice and myself asked LDAA to sponsor the posters for the WWLP - Australia events in February 2013), and all the other wonderful advocates around Australia that joined in with the organisation of events to make Australia's participation in this inaugural event extremely successful.
TV Interviews:
14th February 2012: Today Tonight Interview: https://www.youtube.com/watch?x-yt-ts=1421782837&v=ylTwGxhdsX0&x-yt-cl=84359240
Newspaper articles:
19th November 2012: Lyme Disease Is Here – Mum tells Government: http://www.dailymercury.com.au/news/lyme-disease-is-here-mum-tells-government/1626476/
27th November 2012: Patients could wait years for recognition: (Re the Brisbane Protest)
http://www.dailymercury.com.au/news/patients-could-wait-years-for-action/1637140/
Co-Founded a Global Association
After Working on the Worldwide events, co-founded Global Lyme & Invisible Illness Organisation with American Lyme Advocate and friend, Lisa Hilton, in 2013. Website: http://www.globallymeinvisibleillness.org/
** Attended first Lyme Protest in Australia (organised by Danielle) outside NSW Health in September 2012
** Co-Organised the Lyme Protest outside QLD Health in Brisbane with Rachael Robins in November 2012
** Signed Australia up for Participation in the Inaugural Worldwide Lyme Protest in 2013 and developed a website to collate information about all the events around Australia, as well as information about the various countries participating.
Worldwide Lyme Protest (Project) Australia Website : This link will take you to the 2013 Worldwide Lyme Protest (WWLP) Australian Events Round-up - which also gives a shout out to Janice Foster (who joined as National co-coordinator with myself (Karen Smith) in November 2012), Sharon Whiteman / Lyme Disease Association Australia (LDAA) (who joined the WWLP - Australia team in March 2013 after Janice and myself asked LDAA to sponsor the posters for the WWLP - Australia events in February 2013), and all the other wonderful advocates around Australia that joined in with the organisation of events to make Australia's participation in this inaugural event extremely successful.
TV Interviews:
14th February 2012: Today Tonight Interview: https://www.youtube.com/watch?x-yt-ts=1421782837&v=ylTwGxhdsX0&x-yt-cl=84359240
Newspaper articles:
19th November 2012: Lyme Disease Is Here – Mum tells Government: http://www.dailymercury.com.au/news/lyme-disease-is-here-mum-tells-government/1626476/
27th November 2012: Patients could wait years for recognition: (Re the Brisbane Protest)
http://www.dailymercury.com.au/news/patients-could-wait-years-for-action/1637140/
Co-Founded a Global Association
After Working on the Worldwide events, co-founded Global Lyme & Invisible Illness Organisation with American Lyme Advocate and friend, Lisa Hilton, in 2013. Website: http://www.globallymeinvisibleillness.org/
2. To provide scientific information to the Australian Health Departments about the urgent necessity for adequate research into the existence of the borrelia species responsible for Lyme disease/borreliosis in Australia.
** The scientific information is presented with nearly 1000 scientific journal articles and highlights the tick and reservoir hosts that are involved in the Lyme / borrelia cycle, which are indeed present in Australia ; despite the Government’s insistence that they are not.
** Lyme Transmission and Maintenance : The presence of known tick vectors which include, bird ticks (I. uriae and I. auritulus), and bush/scrub tick (H. longicornis), as well as ticks that have been found to be carriers/potential vectors (R. sanguineus, R. microplus), along with the animal hosts (eg: birds, mice, rats, hares, dogs, foxes, deer, horses and cattle) of these ticks, and their possible role in the spread and maintenance of Lyme disease in Australia are discussed. Dermecentor ticks are briefly discussed due to studies on co-feeding with tick revealing that vector competence is altered when examining one tick species, as opposed to numerous tick species "feeding" together.
** Lyme Disease: A Counter Argument to the Australian Government’s Denial: A examination of the Australian Health departments denial is presented. The counterargument discusses the 1994 study by Russel et al., which is consistently used to deny the existence of Lyme disease in Australia.
** The scientific information is presented with nearly 1000 scientific journal articles and highlights the tick and reservoir hosts that are involved in the Lyme / borrelia cycle, which are indeed present in Australia ; despite the Government’s insistence that they are not.
** Lyme Transmission and Maintenance : The presence of known tick vectors which include, bird ticks (I. uriae and I. auritulus), and bush/scrub tick (H. longicornis), as well as ticks that have been found to be carriers/potential vectors (R. sanguineus, R. microplus), along with the animal hosts (eg: birds, mice, rats, hares, dogs, foxes, deer, horses and cattle) of these ticks, and their possible role in the spread and maintenance of Lyme disease in Australia are discussed. Dermecentor ticks are briefly discussed due to studies on co-feeding with tick revealing that vector competence is altered when examining one tick species, as opposed to numerous tick species "feeding" together.
** Lyme Disease: A Counter Argument to the Australian Government’s Denial: A examination of the Australian Health departments denial is presented. The counterargument discusses the 1994 study by Russel et al., which is consistently used to deny the existence of Lyme disease in Australia.
* LARA was proud to be the first website in Australia to provide hundreds of links to scientific journal articles with regards to the Research and Science underlying Lyme. In March-April 2014, Kate Daniels (of MSIDS Inc) organised a team to collate all information and references from the various websites / Associations/ Foundations, in order to develop the Media/Research pack which is located on the Lyme Disease Association of Australia Website (LDAA). The information is now kept up to date by the LDAA volunteers.
Research Written:
“Lyme Disease: A Counter Argument to the Australian Government’s Denial” K. Smith 2012.
The following You-tube was for the First Worldwide - Though the video focus’ on the problems with Research and Denial in Australia and talks of some of the issues in the counterargument: https://www.youtube.com/watch?v=kfKaeh8i46c
Lyme Borreliosis: History and Borrelia Species, Clinical Picture, Symptoms, Clinical Disease in Animals, Co-infections
Lyme Transmission: Transmission & Maintenance, Tick Vectors Of Lyme Borreliosis, Birds as Vectors and Reservoir Hosts, Mammals as Vectors and Reservoir Hosts
LARA / Karen also Submitted A Response to the Scoping Study, in regards to the Clinical Advisory Committee on Lyme
Research Written:
“Lyme Disease: A Counter Argument to the Australian Government’s Denial” K. Smith 2012.
The following You-tube was for the First Worldwide - Though the video focus’ on the problems with Research and Denial in Australia and talks of some of the issues in the counterargument: https://www.youtube.com/watch?v=kfKaeh8i46c
Lyme Borreliosis: History and Borrelia Species, Clinical Picture, Symptoms, Clinical Disease in Animals, Co-infections
Lyme Transmission: Transmission & Maintenance, Tick Vectors Of Lyme Borreliosis, Birds as Vectors and Reservoir Hosts, Mammals as Vectors and Reservoir Hosts
LARA / Karen also Submitted A Response to the Scoping Study, in regards to the Clinical Advisory Committee on Lyme
3. To provide basic, "easy to understand" information on Lyme disease, how it is transmitted and how it can be associated to so many various health problems.
** Lyme Borreliosis Section of Website: Whilst there are numerous Lyme sites with very good information : It can be hard to understand how one disease can be related to so many health problems. It is hoped that by outlining the basic underlying principles (Clinical Picture/Symptoms segment), it is easier to understand how the borrelia bacteria can affect the entire body: this will ultimately help understand that the disease, and that treatment is multi-faceted and requires various modalities such as immune support, muscle and tissue repair, as well as antibiotics/herbs. Treatment length, intensity, and "repair" will also depend on whether the infection is detected and treated in the early (acute) stage, as opposed to disseminated or long term infections.
** Lyme has been misdiagnosed as many different diseases / health problems. To understand when/where it may be beneficial to look at the possibility of Lyme as a differential diagnosis, these misdiagnosed illnesses will be outlined and clinical case studies/journal article links provided.
** Lyme Borreliosis Section of Website: Whilst there are numerous Lyme sites with very good information : It can be hard to understand how one disease can be related to so many health problems. It is hoped that by outlining the basic underlying principles (Clinical Picture/Symptoms segment), it is easier to understand how the borrelia bacteria can affect the entire body: this will ultimately help understand that the disease, and that treatment is multi-faceted and requires various modalities such as immune support, muscle and tissue repair, as well as antibiotics/herbs. Treatment length, intensity, and "repair" will also depend on whether the infection is detected and treated in the early (acute) stage, as opposed to disseminated or long term infections.
** Lyme has been misdiagnosed as many different diseases / health problems. To understand when/where it may be beneficial to look at the possibility of Lyme as a differential diagnosis, these misdiagnosed illnesses will be outlined and clinical case studies/journal article links provided.
4. To Provide Lyme Patients a place for a "voice" to tell their stories, to share their artistic talents and provide access to treatment and research forums.
** To collate patient stories to raise awareness and recognition of the existence and devastation of this disease. By collating stories it can be shown that Australians living with Lyme is by no means "rare".
** Displaying patients artistic talents, Both in getting the word out about Lyme in various genre's, such as poetry and song, as well as displaying/ linking to crafts that patients make/sell to help with the cost of Lyme treatment.
** Advocate and Support Patients: Karen started the Lyme Australia & Friends Facebook Support group in July 2012 : With a team of admin, and all members support they help see each other through the trials of Living with Lyme & Co.
** To collate patient stories to raise awareness and recognition of the existence and devastation of this disease. By collating stories it can be shown that Australians living with Lyme is by no means "rare".
** Displaying patients artistic talents, Both in getting the word out about Lyme in various genre's, such as poetry and song, as well as displaying/ linking to crafts that patients make/sell to help with the cost of Lyme treatment.
** Advocate and Support Patients: Karen started the Lyme Australia & Friends Facebook Support group in July 2012 : With a team of admin, and all members support they help see each other through the trials of Living with Lyme & Co.
5. To discuss the various testing methods and treatment options for Lyme / Borreliosis (Under Construction)
** This section will start out with various testing methods available to Australian patients and how to go about obtaining them. Eventually it is planned to add various information with regards to the pro's and con's of each different testing (Ie: PCR, Western Blot) method. This will be an ongoing section of the site.
** To provide Links to alternative (other then medical doctors) Lyme aware health practitioners that may help aid the patient with supplementary / alternative therapy. For example, Bowen therapy, Acupuncture, Holistic dentistry, Chiropractic.
** Treatment and Research forums - To discuss various aspects of treatment and provide research links, information in order to help patients be more informed about the treatment options
** This section will start out with various testing methods available to Australian patients and how to go about obtaining them. Eventually it is planned to add various information with regards to the pro's and con's of each different testing (Ie: PCR, Western Blot) method. This will be an ongoing section of the site.
** To provide Links to alternative (other then medical doctors) Lyme aware health practitioners that may help aid the patient with supplementary / alternative therapy. For example, Bowen therapy, Acupuncture, Holistic dentistry, Chiropractic.
** Treatment and Research forums - To discuss various aspects of treatment and provide research links, information in order to help patients be more informed about the treatment options
Please Note: LARA was published with a few areas of the website "under construction". Whilst the majority of the scientific information was completed within the first 6 to 12 months, the other sections (patient stories, misdiagnosis / associations with other diseases, testing and treatment options are planned to be ongoing/time permitting additions to the website). As I am still undergoing treatment for Lyme, please bear with me if progress is a little slow. Thanking you for your understanding and patience. Karen Smith.
