Profits from Baron's book - Do It Anyway - sales are donated to the Karl Mcmanus Foundation, for the research & of Tick Bourne Illness in Australia.
The Tick borne Diseases (TBD)/ Debilitating symptoms attributed to ticks (DSCAT)/ Lyme disease/Lyme like disease are some of the names bandied about for non-specific symptom, multi-systemic infectious syndrome contracted from blood sucking insects in Australia.
Controversy is embedded in the number of names used to describe it. Unfortunately, none of the above names describe these infections appropriately. Better terminology may be Arthropod borne infections.
Baron’s wife, Davina contracted these infections even though she does not recall a distinctive tick bite. We need to keep in mind that ticks release anaesthetics so the host would not feel a tick bite.
Her trials and tribulations during her illness transformed this young family from being charmed to being challenged. In the process there were many life lessons to be learned. But Baron and his family took on the challenge and developed many crucial insights of survival when all their life was crumbling in front of their eyes.
Serious diseases inflicting families like cancer can destroy the families or make family bonds stronger. However, with TBD inflicted families it is more common for the family to fall apart as symptoms of the ill family member vax and wane. This creates doubt in the minds of family members whether the patient is really ill or faking it. Hence sometimes this infectious disease is called an invisible stealth illness. Unlike others, Baron’s family have managed to grow stronger bonds through their experience.
Renewed interest in Australia’s TBD begun with my husband Karl McManus who contracted this infectious disease while filming in Duffy’s forest in Sydney. Karl was unfortunate to suffer from neuroborreliosis. For 3 years we battled with the infection in the CNS. Because the infection spread slowly the infectious nature of his condition was ignored. Instead he was diagnosed with neurodegenerative diseases like motor neuron disease, multiple sclerosis etc. Having a diagnosis meant nothing to us. It was bad enough being seriously ill but when you are battling the medical fraternity and the disease the task becomes humongous. Karl lost his battle in 2010. His death opened up the Pandora’s box of vector borne diseases in Australia. While he was sick we formed the Lyme Disease Association of Australia. Upon his passing I formed the Karl McManus Foundation (KMF) in his memory.
The controversy and politics is evident from the undefined nature of this infectious syndrome. In my explorations I realised Australian TBD was more like a relapsing fever Borrelia infection than Lyme disease. In a short period the term Lyme disease became a negative term that blocked communication between doctor and patient resulting in diagnosis of psychosomatic disorders. Continued branding of Lyme disease escalated the controversy. A disease is not a can of Coca Cola with an exact secret formula that can be branded. Scientific discovery determines the description of a disease. Uniting scientific evidence is needed to better define this disease, not Lyme.
Research is pivotal in unravelling the mysteries of tick borne diseases. KMF is the only charity funding research into tick borne diseases in Australia. Karl McManus Institute (KMI) has been formed to concentrate on tick borne diseases more intensely.
There is a lot of confusion over tick borne diseases in Australia and globally. While discussion abounds people who are ill are ignored by the medical fraternity or are misdiagnosed as some somatic disorder.
Tick borne diseases (TBD) are one of the most debilitating diseases in the world. They can be fatal for some. TBD is very misunderstood due to the idiosynchronicity of these infections. TBD do not fit the classical mould of an infectious disease. Ticks are not the only vectors, not all ticks vector infections and not all tick bites are infectious.
Unlike other infectious diseases the onset of symptoms can be delayed by weeks to months. Symptoms are usually non-specific, everyone can have their own set of symptoms which are multi-systemic making clinical diagnosis very difficult. Therefore there is a high reliance on diagnostics. Unfortunately laboratory tests are also not reliable due to the high mutation rate of the bacteria and immune dysregulation. Furthermore treatment can worsen the symptoms due to herxheimer reaction.
There are many challenges in combatting these vector borne infectious diseases. If diagnosed early before the immune system is dysregulated treatment outcome is positive.
However if there is a delay in treatment recovery can be very difficult.
A medical paradigm shift is required to address the unique properties of these infections so people like Davina who are ill can be diagnosed early.
We are grateful to be working with Baron to increase public awareness of Tick Borne illness both here in Australia and overseas.