LIZA Cannavo’s accepted the word “remission”, realistic about not being “cured”.
The mother-of-five said she was “treating for remission” and was hopeful sufferers of the disease that had gloomily coloured more than two decades of her life would be better recognised and supported by doctors, specialists and government.
That’s precisely why Lyme disease is a controversial conversation to have in some public spheres.
Well researched and versed Liza has no qualms about telling it straight.
“Lyme (disease) isn’t recognised in Australia for support,” she said from her home in Severnlea, on the Granite Belt, in Toowoomba diocese.
“The current government position is there’s no American strain of Lyme here … (but) they have accepted that strains being found are European.”
One or more bites from a “vector”, or tick, can lead to a diagnosis of Lyme disease, the impact of bacteria in the Borrelia burgdorferi group.
“The exact number of people with Lyme disease in Australia is not known because our public health officials do not collect statistics about it,” the Lyme Disease Association of Australia (LDAA) reported.
The association tries to “collect statistics” from sufferers, via a voluntary survey.
Liza said sufferers of any number of issues such as fatigue, nausea, pain, cramping, memory loss and chronic unwellness had, like her, often remained puzzled as to a diagnosis.
Without correct treatment, tick bacteria can adversely and often, irretrievably, damage the brain and other vital organs.
Those seeking answers had been sent home with the suggestion “it will pass” or to “see a psychiatrist”.
Some people Liza knew said they were made to feel as though the condition existed “only in their head”.
Her tick bite was precisely there, where it remains.
“I was twenty-two when I got bitten by a tick while in the Bunya Mountains, near Kingaroy,” Liza, now 48, said.
“I didn’t realise until quite a few weeks after that, that I had something stuck in my head and even when I did realise, I didn’t think much about it.”
That was “because there wasn’t much awareness about tick bites in general and what to do”.
Not long after, she recognised “some strange symptoms … like unexplained joint pain, fatigue and gut issues” despite being “active and otherwise well”.
The only other time she recalled being similarly unwell was when visiting Thailand.
Cases of tick bites have been reported in North America, Europe, Asia and Thailand.
Liza can’t say for certain if one or both incidents, in Australia and overseas, contributed to her Lyme diagnosis.
When her eldest child Thomas was born when she was 29, the pregnancy and birth was “good”, she said, but increasing unwellness followed, to the point where caring for her newborn was significantly challenging.
Now, more than 25 years later, Liza, like others attempting to piece together the puzzle of unexplained illness, has “spent years and a small fortune going to doctors and specialists”.
She remained undiagnosed until almost seven years ago.
The diagnosis took “two separate tests in two countries (America and Germany) four years apart”, she said.
Liza’s disappointed there wasn’t more awareness throughout her pursuit for answers and an opportunity to access the vital antibiotics that can help with a cure of tick-bite symptoms and long-term damage if used promptly.
Women’s tennis champion Samantha Stosur has publicly shared of her 2007 diagnosis of Lyme.
Ms Stosur said she believed she was bitten in Paris and was fortunate to have found a doctor in America who diagnosed, treated and aided her return to the court.
“The infectious disease specialist that I went and saw, once he put all my symptoms together … he was pretty adamant that I definitely had Lyme and that’s what he was going to treat me for,” Ms Stosur said on SBS TV Insights program last November.
“I think I’m very lucky that I ended up going back to America … I just feel like everything is a little bit more progressive away from Australia as far as that goes.”
Liza’s treatment, following diagnosis, led her to Malaysia and, in 2017, Cyprus.
Family, friends, local businesses in and around Stanthorpe and even strangers, helped raise or donated the necessary funds for last year’s travel and treatment, about $11,000.
Liza’s husband of 11 years, Mario, kept home fires burning and cared for their children Livia, 10, Leo, 8, Marcus, 6, and Allegra, 3, during last year’s six weeks of overseas treatment.
Liza had “IV (intravenous) ozone” for six days a week, and said the trip was “life changing”.
She returned home to make final preparations for and celebrate Livia’s First Holy Communion last September in St Joseph’s Church, Stanthorpe.
Having also long removed gluten and dairy from her diet, Liza’s ever-mindful of pollutants, near and far.
Today, she’s feeling more hopeful than ever, enjoying significant improvements in her health although continuing to battle “co-infections”.
“We’ve stopped treating the Lyme bacteria itself … (and) that’s reduced enough for me to function,” Liza said.
“I have to keep going with my treatment; it’s a balancing act of what to treat and how to treat it.
“I’m getting through the day without a sleep and Mario has noticed a huge difference.”
The Australian Government has committed $3 million for research into tick-related conditions following recommendations from a Senate inquiry concerning “growing evidence of an emerging tick-borne disease that causes a Lyme-like illness for many Australian patients”.
A November 2017 government report said the funds “will be a significant response to the concerns of patients who are seeking answers to their medical condition”.
LDAA chief executive officer Sharon Whiteman said they “had high hopes the Senate inquiry would lead to some responsible policy responses as the evidence presented by the patient community was compelling”.
Liza’s hopeful the funding would be spent “looking into any blood-sucking parasites”, and advocates “more public treatment centres and awareness campaigns, updated pathology and an extension of doctors’ knowledge base”.
“I would like to see people, who have just been bitten by a tick, to go to any doctor and have the doctor say, ‘This is what you need to do’,” she said.
“If you don’t treat (a tick bite) in early stages, there’s no chance to get on top of it.
“Lyme is a very lonely and frustrating disease.
“I’ve come to an acceptance that it is what it is and if it wasn’t for Mario and the kids, I wouldn’t try so hard.”
To contact the LDAA go to www.lymedisease.org.au
To view the Australian Government response to the Senate Community Affairs References Committee final report visit www.health.gov.au
By Selina Venier