By Mark Rostoks
I’m a young bloke (now 39) who became ill fifteen years ago with a chronic neurological disorder, leaving me quite disabled; a quadriplegic, in fact. I lost movement, I have speech difficulties and lost oh so much of my own independence; yet it’s losing the everyday aspirations of career and family that hurt the most.
As you can imagine, any chance of a normal life slipped away. Instead my days (and years) became a constant round of hospitals, doctors’ appointments, poking, prodding, testing, blood-letting, treatments and enough pills to make me rattle.
At age 30 I decided to do something about it; I started my ‘bucket list’ of all the things I wanted to experience, so I could squeeze as much quality out of this depleted life of mine as possible. I’ve been lucky enough to meet some amasing people and do some amasing things.
I’ve run a half marathon (in my wheelchair), appeared on Neighbours, even kissed Miranda Kerr.
In spite of all these achievements, my health was still at the forefront of my mind. After years of specialists and testing to eliminate all the possible diagnoses, I finally found a doctor who sent my blood overseas for testing and it came back positive for Lyme disease (Borreliosis).
So what was this Lyme disease that I’d never even heard of before? Lyme is a bacterial infection (typically the result of a tick bite) that, without treatment, can have serious repercussions on the
human body. It is known as ‘the great imitator’ because it can be mistaken for many other diseases. Symptoms can range from chronic fatigue, fibromyalgia, seizures, paralysis or even Parkinson’s-like tremors. Most Lyme sufferers are also afflicted by a range of ‘co-infections’ such as Babesia, Bartonella and Rickettsia – all with their own nasty symptoms. The good news is that, with proper medical treatment, recovery is possible! However, in many countries, Lyme is not yet recognised as a ‘chronic’ condition. Typically a short course of antibiotics is all the
treatment you’ll be offered, even though the symptoms can persist and amplify for decades.
In Australia – due to a single study of indigenous ticks not revealing the American strain of the offending bacteria - our government and health authorities say 'Lyme doesn’t exist here'. Even if you were infected overseas (as I was), it’s a struggle to get proper treatment in this country; despite the fact that there are now thousands of people here with a positive Lyme diagnosis.
In May 2013, Lyme awareness events were held worldwide. I attended the Melbourne event held at Federation Square and meeting with other Lymies helped me to feel like I was no longer alone in this sometimes overwhelming battle. Just like in the early days with AIDS/HIV, it’s pretty tragic when the sickest of people have to battle authorities so they can receive proper treatment.
Hopefully history will record us as having been the first Aussie Lyme warriors, paving the way for future generations to receive prompt intervention and effective treatment so others won’t have to suffer for years and lose quality of life as we have done.