Joanne Grima is just one of the thousands of Australians who has been diagnosed with Lyme disease, a debilitating tick-borne illness. But medical authorities remain unconvinced it even exists on our shores.
In July 2013, Joanne Grima, Sydney primary school teacher, had realised enough was enough. Her doctors had said she could no longer work, drive, live by herself, shower independently or swim without constant supervision. It was on this day, in a staff meeting, she had experienced one of many absence seizures.
In the preceding years, she had experienced multiple seizures, crippling migraines, muscle and joint spasms, a meningioma tumour on her brain, memory loss, anxiety, fatigue, weight gain, slurred speech, double vision, arthritis and PCOS. “I was being held prisoner by this mystery illness, I thought my life was slowly ending” said the 29-year-old.
Always a fighter, she was desperate to discover what was really wrong with her, after being misdiagnosed with epilepsy, multiple sclerosis, early on set of dementia and obsessive compulsive disorder. There was never any evidence of these illnesses and the medication only made her more unwell. Why couldn’t any doctor find out what was wrong with her? A super-fit, intelligent young woman had been riddled with pain and debilitating symptoms.
What she didn’t know then was she had joined thousands of Australians suffering from a multitude of symptoms, which is believed to be evidence of Lyme disease, a tick-borne illness, existing in Australia even if health authorities remain hesitant.
Its controversial status, lack of awareness and reluctant doctors treating the illness might explain why Joanne had so much trouble finding answers. Over the next two months, she visited a kinesiologists, a naturopath and her neurologist.
“My neurologist wanted to put me on heavy epileptic medication and said I was not allowed to drive, or live alone. I was told I wasn’t allowed to return to work,” she said.
It was at this stage, crippled with pain and confusion and knowing the horrific side effects she experienced when on the medication previously, she decided she would no longer see her neurologists.
“It was scary, I felt I was going this alone, my family were very supportive, but no one knew what was wrong with me, I really took a leap of faith,” she said.
It was Joanne’s uncle, Charlie, who had watched a documentary on Lyme disease a few months prior who suggested she might have it. A complex, infectious disease caused by bacteria carried by some ticks. Lyme was named after the town in Connecticut that experienced an outbreak in 1975. Joanne was bitten by a tick in Bundeena, in Sydney’s Royal National Park where she grew up.
“We had always mentioned to the doctors over the years that I had been bitten by a tick, but no one had thought it was relevant,” she recalls. “I was 7-years-old when my parents had discovered the tick on the top of my head after I had been complaining for a few days of a sore head,” she said.
Over the years, Joanne’s symptoms worsen. Her parents had tried many different doctors with little success. Joanne’s father, John, said he really started to fear for Joanne’s life when she started to doubt herself.
“She was always very strong and positive but then she started to wonder if it was all in her head, we knew she wasn’t making it up but the doctors were making her feel that way,” said Mr Grima.
Now, at least, Joanne had a theory. She had no idea, however, of the hurdles that lay head. While Lyme disease is recognised in the US and across Europe, The Australian Federal Department of Health said they need more evidence and cases before it is recognised. “The conclusive finding of the bacterial species that could cause a Lyme disease-like syndrome in Australia is yet to be made,” they said. Meanwhile, the Lyme disease Association of Australia estimates there are 300,000 Australians currently living with the bacteria-borne illness.
After doing her own research, Joanne had come across a kinesiologist. He suspected it was Lyme and sent Joanne’s bloods to America for an extensive analysis. Her results came back positive. Through a friend, Joanne was referred to a Lyme treating doctor, in Sydney. Joanne was diagnosed with chronic Lyme disease with four co-infectious diseases. During this time, Joanne started to see a Sydney-based naturopath.
“My doctor and naturopath worked together to treat me for Lyme disease and the co-infectious diseases.” said Joanne. “This was the first doctor who listened to me, listened to my symptoms and wanted to find the cause and had no hesitation in working side by side with my naturopath to get me better.” she said.
For most people, getting this diagnosis would be devastating. But for Joanne, it was a relief. “My family had spent thousands of dollars on medication, operations and treatment over the years which just made me more ill,” she said. “I was told that Lyme disease is fatal if not treated, but I knew I was going to get better and I finally had an answer,” she said.
Antibiotics are generally used to combat the bacteria, although the possible side effects of long-term treatment with these drugs are another concern. Due to Joanne having been on so many different medications over the years, her immune system was very weak. Her naturopath said it was important to get her immune system strong again and antibiotics would make it worst.
“We always focus on the cause and attack that, I put Joanne on an intensive detox, parasite therapy and vegan diet,” said Sydney-based naturopath.
Joanne and her doctor had agreed that they would treat her Lyme with natural therapies for 12 months, if there were no improvement she would start antibiotics. “I was so lucky my doctor agreed to this treatment and was happy to monitor me,” said Joanne. “The doctor knew my immune system was very weak and wanted the best result for me” she recalls.
It wasn’t an easy ride, with many herxheimer reactions, debilitating pain, being told her IQ can be lowered and having to resign from her job, but Joanne knew things would get better. “My faith is very strong and I believe everything happens for a reason. It lead me to meet my fiancé who has been on this journey with me and has stuck by my side,” she said.
“The complexity of the disease is mind-boggling,” says Dr Mualla McManus, a Sydney-based clinical pharmacologist convinced Lyme, or a Lyme-like disease, is here in Australia. The 52-year-old’s interest is deeply personal. Dr McManus believes Lyme complications killed her husband, Karl, after a tick bit him in 2007 in bush land on Sydney’s northern beaches. In 2010, she set up the Karl McManus Foundation to fund research to identify “exactly which Lyme bacteria exists in Australian ticks and patients”.
Even though the Chief Medical Officer’s Clinical Advisory Committee on Lyme Disease (CACLD) has ceased, the Australian Government Department of Health will maintain an interest in an Australian Lyme disease-like syndrome. The department has established a website (health.gov.au/lyme-disease) with advice and updates.
After 2 years of intense treatment, Joanne Grima, is now in remission from Lyme disease. Although, her life will never be the same and it will be difficult for her to ever work full time again due to the damage the years of medication and the disease has done to her body, her future is bright. “I am getting married in two months and have completed two Masters degrees and started my own business,” she said. “I won’t let anything beat me or hold
me back,” she said.