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
It was only a little over two years ago 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 (Hons). With a final grade of 92.4% I graduated with First Class Honours and was awarded the Australian Psychological Society Prize (awarded to the person ranked first in their class). 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. When deciding to continue on with PhD studies, I was fortunate enough that the grades I had achieved in my first degree enabled me to be granted an Australian Postgraduate Award (APA) scholarship.
In 2009, 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 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 Health Departments lack of recognition of Lyme Borreliosis in our country.
In 2009, 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 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 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 Disease. 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 Disease in Australia.
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 Disease. 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 Disease 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.
Please see the Australian Awareness "Television Coverage” for links to other news/media segments on Lyme.
