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Our 'World Class' Health System Doesn't Get My Tick Of Approval

If it’s not Lyme, would the real disease please stand up? 

25/10/2016 11:12 AM AEDT | Updated 25/10/2016 11:12 AM AEDT
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"What seemed to be harmless bugs on my feet turned out to be ticks and their bites would change my life."

The Department of Health website states: "Australia's health system is world class, supporting universal and affordable access to high-quality medical, pharmaceutical and specialist services."

This has not been my experience. In early 2014, an unknown illness assailed me and my health quickly deteriorated. The full impact of Lyme disease and what it would put me and my family through has taken years to deal with, and the journey is not over.

This two-year battle started near a Central Coast beach in NSW. What seemed to be harmless bugs on my feet turned out to be ticks and their bites would change my life.

The initial severe, flu-like illness, with a doughnut-shaped rash, left me prostrate, in the bottom of the holiday house shower, for 10 days, and costly visits to hospital did nothing.

Brain fog, night sweats, swollen hands and feet, chronic neck and shoulder pain, chronic diarrhea and stomach pain, fatigue and a literal cohort of other symptoms ensued. I could not shake them for nearly 12 months.

Being bedridden for weeks at a time and laying my head on my wife's lap became commonplace. Not remembering a movie or what I was just saying was devastating. Missing almost 12 months of my new baby's life brought frustration, depression, anxiety and family issues. I saw countless doctors and was told that I was losing the plot, and that I should seek psychological assistance.

I remember pleading with a doctor and asking the question why I would intentionally destroy my own business and my family's lives. The doctor changed his tune and finally diagnosed me with Chronic Fatigue Syndrome. After nine months of seeking treatment, I finally came across a doctor treating chronic fatigue, but after careful examination, he stated he thought it was a Lyme-like illness rather than chronic fatigue, and treatment began.

I could have endured the subsequent medical problems better, but my brain was not functioning clearly, and, being in the web development industry, clients quickly became disillusioned. We lost a very profitable business, increasing our distress.

Could I get a disability support pension once the money ran out? Not a chance. Centrelink told me that I didn't qualify, even after showing them that my company was gone and my income had dried up.

I borrowed heavily from family and church members, and now that I'm able to work again more consistently, I have been paying it back. My mother retired, unlocked her super and spent the majority of it supporting our family. If not for all that assistance we would be on the street.

My doctor suggested I have my bloods analysed by Igenex in the USA, but due to the costs of the tests I took some convincing. It took about six months to get them done.

I was shocked when it returned a positive result for three Lyme-related co-infections, even though the Lyme Borrelia test said 'inconclusive'. Both the doctor and I felt this was because we had started to treat the bacteria before I could afford the test.

The drugs I took are not on the PBS, so are prohibitively expensive. One drug, Welvone, is over $1100 per two weeks (recommended 12-week course) which is more than Centrelink pays per fortnight.

There are thousands of people with a similar Lyme-like illness getting little or no recognition. If diagnosed early and given antibiotics immediately, the disease would have been arrested, and our family would never have suffered in this way.

My symptoms emulated Lyme (and its co-infections), so if it's not Lyme, would the real disease please stand up? And would the experts stop bashing both the patients and the doctors who treat them with charges of "unconventional medical protocols"?

The entire issue is the Government's inability to understand that there is a very simple solution -- belief in the people that have it. Our GP's need training. Studies need funding. Trials need to be undertaken fast. Access to low-cost, high-quality Lyme disease doctors needs improving. The doctors treating people with Lyme-like symptoms are booked months in advance or have closed the books to new patients. Doctors are scared that the Medical Association will pull their licenses for treating this sort of illness.

Misdiagnosis of Lyme is an issue, as it is with any illness. Let's put our "world-class health system" to work and develop a rapid test, like the strep test, that can be administered in a GP's office.

And until that day comes, leave Lyme-literate doctors alone. If we don't have action, the fallout from generations of 'Tick Sick' families will be a much harder burden to bear or solve.

Either that or it's time to change the statement on the health website.

___________
Jesse is a guest on tonight's episode of Insight at 8.30pm on SBS.

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