Lyme Australia: Recognition & Awareness
  • Home
  • About Lara
    • LARA's Aims & Work
    • The Author / Founder
    • Copyright & Disclaimer
    • Contact Us
  • Research
    • Lyme Borreliosis Research. K Smith (LARA)
    • Lyme Borreliosis: An Overview of Lyme and Direction for further Research
    • Counter Argument (K Smith)
    • Migratory Marine Bird areas around Aust. Coastline >
      • Queensland Marine Bird Areas
      • New South Wales Marine Bird Areas
      • Victoria Marine Bird Areas
      • Tasmania Marine Bird Areas
      • South Australia Marine Bird Areas
      • Western Australia Marine Bird Areas
      • Northern Territory Marine Bird Areas
    • Clinical Advisory Committee (Govt)
    • Scoping Study Comments /Responses
    • Senate Inquiry 2016 : LARA / GLiIO / K Smith Response
  • Lyme Borreliosis
    • History & Borrelia Species
    • Lyme Borreliosis: Clinical Picture, Symptoms
    • Clinical Lyme Disease in Animals
    • Co-Infections Associated with Lyme >
      • Babesia
  • Lyme Transmission
    • Transmission & Maintenance >
      • Tick Vectors of Lyme Borreliosis
    • Various Transmission Methods of Borreliosis (Lyme)
    • Tick Vectors + Reservoir Hosts of Lyme / Borrelia in Australia
    • Birds as Vector & Reservoir Hosts: Including examination of I.uriae (seabird) & I.auritulus (bird) ticks
    • Mammals as Vector & Reservoir Hosts: Including examination of H.longicornis (scrub/bush) & H.bispinosa ticks
    • Rhipicephalus and Dermecentor Ticks
  • Resources
    • Support Groups (Lyme & Co)
    • Websites (Lyme & Co)
    • Documentaries
    • Books
  • Lyme News
    • Worldwide Awareness Protest
    • Aust 1st International Tick-Borne Conf
    • Sydney Uni Study
    • Ally Durr Awareness Hike
    • LDAA Patient Survey
    • Qld Lyme Protest >
      • QLD Protest Registration/Support
    • Adelaide Public Forum
    • NSW Lyme Protest >
      • NSW Protest Registration/Support
  • Lyme In The Media
    • Television Coverage
    • Newspaper / Magazine Coverage >
      • 2009: Young
      • Young 2010: Sydney Morning Herald
      • McManus 2010 : Sydney Morning Herald
  • Lyme & Related Illness'
    • Autonomic Nervous System Dysfunction
    • Distorted Perceptions: Todds Syndrome aka Alice In Wonderland Syndrome
    • Eye / Occular
    • Intracranial Pressure
    • MND / ALS / Lou Gehrigs
    • Nerve Palsies - Including : Bells, Trochlear
    • Stroke
    • Fatalities
    • Heart / Cardiac
    • Paediatric – Lyme in Children
    • Skin Disorders >
      • Pityriasis Rosea
  • Forever Remembered
    • Scott Chant Feb 2016
    • Bryce Nettle Nov 2015
    • Theda Myint - July 2013
    • Paul Blatchford - May 2013
    • Nelson Falero - May 2013
    • Raechel Thomas - January 2013
    • Brendan D - August 2011
    • Karl McManus - July 2010
  • Patient's Corner:
    • Poets Retreat >
      • Lyme Greeblies by Karen Smith
      • Memoirs from a year of knowing my devil: Dancing with Lyme by Emma T
      • Lyme Poem by Dave Main
      • A Poem For My Dad by Abby Andrews
      • Invisible by Karen Smith
    • Songs with a Twist of Lyme >
      • You're So Lyme
      • Hey Jeremy
      • I’ve Got Lyme
      • Bush Tick Connection
      • Like a Lyme Virgin
      • I Feel Shitty
      • Lyme Bug
      • Season of the Tick
  • Lyme Patient Stories
    • Queensland Stories >
      • Karen (Founder LARA)
      • Emily
      • Leah
      • Lucy
    • New South Wales Stories >
      • Janice
    • Victorian Stories >
      • Nichol

Karen Smith : Extremely unwell since 2009 :  Bells Palsy / steroid treatment unveiled underlying latent infection
traced back to minor / constant health issues starting 2003


Borrelia (Lyme) Infection Acquired :  Armstrong Beach, Queensland, Australia: 2003

Co-infections: Bartonella, Rickettsia, possible Babesia. Compromised immune system also leading to problems with
the community acquired infections: Mycoplasma and Chlamydophila pneumonia

 

International Travel History :  Passport obtained 2011


My Story : Written June 2011

Picture
It was only a little over two years ago (2009) when I was content with what I achieved thus far in my life. I had worked, raised three beautiful children, and completed a four year university degree -Bachelor of Psychology with Honours.  With a final grade of 92.4%, I graduated with First Class Honours and was awarded the Australian Psychological Society Prize (for ranking first in their class). This grade also meant that when I decided to continue on to PhD studies, I was granted an Australian Postgraduate Award (APA) scholarship.   My grades reflected not only my study ethic, but also the amazing nature of my children and their understanding with regards to the many hours of study required.

At this time, my children had also reached an age where I could go out occasionally.  With three teenagers at home, study and part-time work, my social life was not that of a party animal, but it was good.  I enjoyed a friendly game of Texas Hold Em Poker,  loved the sound of music and there was nothing better than dancing a Friday night away and chatting to mates.  

Now, I am unable to work and have had to defer my PhD. I don’t go out anymore because even the noise of a simple conversation is grating to my brain most days and due to muscle wastage, a night of dancing is not really an option. My children went from seeing a Mum whom was on the go for 16-18 hours a day, to someone who was in bed for that length of time. My youngest missed out on things had done with her elder siblings, my son, being the man of the house for many years became extra concerned in his quite ways, and my eldest daughter went from a carefree life of just having entered the workforce and enjoying the freedom that a license brings, to having to fit the shopping and cooking for the house into her routine.
​
My current health situation lies squarely on the shoulders of the Australian Government / Health Departments lack of recognition of Lyme Borreliosis in our country.


My journey to this discovery started in April 2009. It began with a case of Bells Palsy, a trainee doctor keeping me on  steroids for months too long, followed by  months of not being able to get out of bed and feeling like I was dying. Trips to specialists followed, with one mentioning that my problems may be due to an underlying autoimmune disorder. Whilst not an answer, this visit led me to do more research and finally in July  2010 I came to the realization that all my symptoms were associated to Lyme disease. I learnt that Bells Palsy is one of the symptoms and whilst initially I had assumed that the speedy withdrawal from  the steroids had led to adrenal problems, what I came to understand was that the steroids had shut my immune system down, allowing the bacteria responsible for this disease to spread throughout my body. When the steroids were stopped and the immune system starting recognizing the bacteria again, the bodies natural reaction was to start fighting and I experienced very many of the symptoms associated with Lyme one after the other. These included, chronic fatique, constant headaches, eye pressure, bone pain, muscle weakness and wastage, hand tremors, stabbing and burning sensations, vertigo, loss of taste, sound and light sensitivity, heart palpations, memory problems, stuttering and swallowing issues...   Just to mention just a few :)  

Whilst  I remembered a tick bite in 2007, I could recall various health problems  (eg: extreme weight loss) starting before then, and I tracked these back to a re-occurring  rash I had had in 2003. This immediately made me think of a rash that my youngest daughter had in December 2002. At the time the doctors had no idea what  it could be, sending  pictures to specialists in Brisbane who concluded it was a rare fungal infection, possibly due to the mice we had for pets at the time. If the doctors in Australia were made aware of Lyme disease when the first 
known cases were reported here in 1982, they would have known that her “rare fungal infection” was in fact a Eyrthma Migrans – the  typical bulls-eye rash that around 40-50% of Lyme patients develop. With this knowledge, I may have also been more aware of what the re-occurring rash signified for my health as well as other signs to be aware of regarding my other two children. 

It has now been over two years since I first became sick, and nearly 12 months since I suspected Lyme disease. Rather than getting easier, the ongoing nightmare of trying to get appropriate tests and treatment in my own country has been nothing short of insane. I have a clinical diagnosis of Lyme disease, with this diagnosis being supported by blood tests. These are not acceptable to the Australian Health department as they were not done through their testing pathology laboratories. If the clinical diagnosis and the supporting blood tests weren’t enough, I also have had a brain scan in which the summary reads, “widespread inhomogeneous cortical hypoperfusion with  involvement of the basal ganglia, but sparing of the frontal lobes is non specific, but can be due to the  encephalopathy of Lyme Disease”.  
But wait - I have never left Australia*, and with the involvement of the basal ganglia, well surely it must be early onset Parkinson’s; because “Lyme disease is not in  Australia”.

If I hear this statement one more  time, I think I will just have to scream.

My story, whilst a tough journey, has had one positive outcome. It made me aware of Lyme disease in this country and to be aware that some of my children’s health problems needed to be examined further. Along with myself and other members of my family (that all lived in the same coastal location), my children have also being diagnosed with Lyme Borreliosis.  Whilst their privacy means that I will not delve into their health problems, the fact that my children are also suffering because of the ignorance surrounding this disease is one of the primary reasons why I am, and will continue to be involved in the battle for recognition of Lyme in Australia.





Below is a short segment of an interview with Today Tonight. One note with regards to this segment.
The leg that they scan to (when I mention bone pain) is actually my daughters  leg (I am guessing due to time 
constraints they did not mention many of my family have Lyme). The rash on the leg was one  section of an
all over body rash she developed when her immune system crashed early in 2012.


Please see the Australian Awareness  "Television   Coverage” for  links to other news/media segments on Lyme.

Picture
"Our lives begin to end the day we become silent about things that matter"  Martin Luther King Jr.

Lyme Australia Recognition & Awareness
© Karen Smith, B. Psych (Hons),  2012 -2020

All Rights Reserved

Contact Us
Follow us:
Picture