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Byron Shire
November 28, 2022

Ticked off

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May is Lyme disease awareness month and I am writing to share some first-hand experience I have had with this terrible illness. Lyme disease is caused by spiral-shaped bacteria known as Borellia burgdorferi and is transmitted to humans by the bite of an infected tick. These ticks often also harbour nasty co-infections, which are also passed on by the tick.

Lyme bacteria known as a spirochete, can penetrate the tissues easily, drilling their way into tissue and bone and all organs. A Lyme spirochete, when threatened by antibiotic or herbal therapy can morph into a cyst form, or become cell wall deficient, which makes it very difficult to treat effectively, and complex to understand. All three forms must be addressed for treatment to be successful.

Now to my unfortunate experience: I had been working happily as a local bush regenerator, a job I trained for and was very passionate about. It being a very physical job, I wasn’t too worried when my large joints began to ache. Soon, a strange brain fog set in, not your normal stoner variety. Fatigue, deep and debilitating, also a bewildering array of symptoms, including tingling arm and fingers and face.

Concerned, I began visiting the doc more and more after answers to these odd ailments. I was diagnosed with chronic fatigue. Soon a myriad of other symptoms appeared including recurrring fever, constant headache, blurry eyes, double vision, constant tinnitus, malaise, migratory arthritis, swollen finger. My face and arm became numb, and still are two years later.

Much worse were cognitive stuff, namely confusion, difficulty thinking and concentrating, short term memory loss. I began to get lost in familiar places. I became too ill to work.

‘What’s chronic fatigue?’ I kept asking – and at times I truly thought I was dying.

The doctors ordered every test known to man, with no answers. The word Lyme was mentioned and when I looked into the clinical symptoms, I had them all, but was told NSW department of health says its impossible to catch it here. WRONG !

To cut a long, expensive story short, I sent my blood to a lab in America where I was diagnosed with late stage Lyme disease and some horrible co-infections. Because I was undiagnosed for so long, the disease had gained a strong foothold in my body, and realistically, I may have this forever.

Treatment is controversial and difficult, requiring multi-layered antibiotics to treat the bugs in their different forms. It’s not uncommon for a patient whom has been ill for many years to require open-ended treatment regimens, or maintenance therapy for life.

Although we have a handful of Lyme-aware doctors in the area, they do not feel qualified to treat this terrible illness which, if untreated can be fatal. Frightening stuff indeed.

I, as a bush worker, did not know I could get sick from a tick. I didn’t learn it in OH&S at TAFE or hear it from the doctor. I found out, after years of being very ill. The closest Lyme-literate doctor is over 300km from me, and I have been travelling there for treatment monthly for the last 17 months. Because the Australian government does not recognise Lyme disease, most medications are not covered by PBS, some costing $600a month. With expensive supplements and herbal remedies, this is a prohibitively expensive illness. Lyme-literate doctors (meaning they have trained overseas) cost between $350- $700 an hour with little rebate.

Because our doctors and specialists are not trained to look for tick-borne illness in this country, most people remain undiagnosed and misdiagnosed. My overseas blood test cost $800 and could cost up to $2000.

Lyme disease is known worldwide as the great imitator, its list of symptoms is very long and varied and it can mimic many illnesses including chronic fatigue, fiibromyalgia, lupus, meningitis, motor neurone disease, multiple sclerosis, Parkinsons disease, rheumatoid arthritis – and this is just a sampling. No wonder our doctors and specialists are too afraid to treat and take an interest in this insidious disease, it is safer to put it and us sufferers in the too-hard basket and hope we will go away.

I felt that by sharing my story, perhaps I could get across a simple truth to you, something I’ve learned the hard way, that you can get sick from ticks. We live on the nth coast, where we are surrounded by and get bitten by ticks. If I had known about this illness, I could have cured it with a three-week course of antibiotics when I was hit. I feel really pissed off that I saw so many doctors over a seven-year period and so much pathology work and remained undiagnosed.

Mine is a common story, similar to thousands of Australians. Daily, I battle this debilitating, disabling disease, caused by a tick! My brain is infected, and I am suffering severe and progressive neurological illness, and my life has become a grey miserable place. At age 51, am mostly housebound, have been unable to work for 2.5 years and have lost my job and career. I am unable to bring money into my household, nor contribute to society. I miss working in the forest, studying, dancing, travelling, dining with friends and being social. I miss feeling alive.

The Chief Medical Officer, Professor Chris Baggoley is very concerned that so many Australians are presenting to their doctors with similar stories, which is why he established the Clinical Advisory Commitee for Lyme disease. See their website for the latest findings of committee and patient experience survey, 2011-2012, where 225 people with Lyme disease participated. Findings from the 2012-2013 survey will be released later this year, with over 800 people participating.

For more info, contact Lyme Disease Australia Association. They have a most informative site, comprehensive symptom list and co-infection info. These people are dedicated to raising public awareness and supporting positive change for patients in Australia.

The American documentry, Under Our Skin, is an award winning film and explains the hidden story of lyme disease, one of the most serious and controversial epidemics of our time.

It can be watched for free from site listed below, it’s a gripping tale that concerns us all and you will never forget it. Be sure to watch the bonus footage.

There will also be a free screening and presentation on Saturday May 31st at 2pm at the Byron Bay Community Centre, Jonson Street, Byron Bay.

Lily Oats, Upper Main Arm.

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