COFFS MUM KEEPING UP THE LYME DISEASE FIGHT
Written by Vanessa Almond (5 May 2011, Coffs Coast Independent News)
FOR Coffs coast mum Natalie Young, her ongoing battle with Lyme disease is nothing compared to the battle she has faced trying to get Australian doctors and medical authorities to acknowledge that the illness is even present in this country, let alone that it is affecting many Australians.
The current factsheet on Lyme disease on the NSW Health website – dated July 2010, yet apparently based on research more than a decade old – states that “Ticks with (Lyme disease causing) Borrelia infection live in temperate forested areas of northern Asia, Europe and the United States.
“In the 1990s, 12,000 ticks were collected from different parts of NSW and were tested for Borrelia bacteria. No evidence of Borrelia infection could be found in any of the ticks collected”.
Yet a report published by the Sydney Morning Herald as early as 1995 quoted associate professor of microbiology at Newcastle University, Richard Barry, as saying he had documented 66 cases of Lyme disease.
“That is probably the tip of the iceberg. If we have found 66, there could be 6000,” Professor Barry said at the time, adding that he believed the disease “existed along the entire Australian east coast in an indigenous strain that differed slightly from the overseas version.”
Suffering “hundreds” of tick bites during her active and rewarding career with the National Parks and Wildlife Service, the once outdoorsy and active young mum these days struggles just to get through each day.
Suffering chronic pain and exhaustion along with fever, headaches, damage to her nerves, head, shoulders and throat, Ms Young said she was at one stage near-death from the infection.
Yet despite a 10-year battle with the disease and several positive Lyme disease diagnoses from world-eminent doctors, she is yet to see any acceptance from the Australian medical community, which she said is causing other sufferers of the disease to go undiagnosed and untreated.
After travelling to the United States to consult with specialists in tick-borne diseases in January, Ms Young said that the American doctors accused the Australian medical profession of “having its head in the sand”, finding the treatment she had received “laughable” and saying that Australian doctors were “failing in their duty of care”.
“To meet the American specialists in this field was such a relief. They knew immediately how to treat the infection and also diagnosed a further infection which was complicating the condition,” Ms Young said.
“Because the Australian medical community is in denial about Lyme disease, local doctors do not have access to the best and most up-to-date tests and treatments for this condition.
“For example, I was given steroids early on in my illness, which is apparently almost the worst thing that can be done for a Lyme disease patient. Plus, the only tests for Lyme disease available to Australian doctors are known as the ‘ELISA’ test and serial Western Blot sampling, which are proven to be inconclusive at best.”
According to the International Lyme And Associated Diseases Society (ILADS), the ELISA screening test misses 35 per cent of culture proven Lyme disease, and, of patients with acute culture-proven Lyme disease, 20-30 percent test negative on serial Western Blot sampling as antibodies appear to decline over time.
“Of all dozen or so Australian doctors I consulted, the only one who was able to help me was (Port Macquarie-based) Dr Peter Mayne, who is himself treating many
patients with Lyme disease and fighting the establishment for recognition of the presence of the illness in Australia. Meeting Dr Mayne saved my life,” Ms Young said.
Fellow Australian sufferers also include Ms Young’s own daughter Matilda, four, who has had the disease since birth, which is, said Ms Young, proof that the illness is also transmitted in-utero. It was concern for Matilda’s declining health that finally pushed the exhausted mum to seek medical assistance overseas.
Despite costs of more than $40,000 for the trip to America, Ms Young, who, along with Matilda, was immediately started on new treatments by her US doctors costing around $1200 per month to maintain, said she will not give up.
“I did this for my daughter,” she said. “She should not have to go through this. Nobody should. The saddest part is that Matilda doesn’t really know how I really am. I used to love life and I was extremely active. Surfing was my passion and I dreamt of teaching Matilda to surf and of us going on surfing safaris together. Now I just don’t know what the future holds.
“I just want the Australian medical profession to take notice and to accept that this Lyme disease is real, it’s here and we need to fight it to end needless suffering.”
Quoted with photo from website: http://www.coffscoastindependent.com.au/news/local/news/general/coffs-mum-keeping-up-the-lyme-disease-fight/2154217.aspx?storypage=2
