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Article on Lyme disease sparks calls for awareness campaign

March 11th, 2018 11:50 AM

By Brian Moore

Skibbereen's Rory Jackson suffers from Lyme Disease (Photo: Andy Gibson)

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A UK SCIENTIST, whose daughter contracted Lyme disease in Bantry, says she would like to be part of an Irish awareness campaign on the tick-borne disease.

Responding to reports of high rates of the disease in West Cork and South Kerry, detailed recently in The Southern Star, Helga Frost explained how her daughter, Heidi contracted the disease at their home in West Cork. 

‘In 1999, my youngest daughter Heidi, then 8 years old, was scratched whilst trying to remove a tick from a friend’s cat, in Scart, near Bantry,’ Helga said. Heidi’s health deteriorated, to the point where she could barely walk and she had the use of a wheelchair. ‘I wasn’t able to get a diagnosis, despite many tests and GP appointments. The most common response I received was: “We cannot find anything the matter with Heidi. It’s all in the mind”.’

With her medical background, Helga took it upon herself to try and find an answer to Heidi’s condition. And when Lyme disease was finally diagnosed, she started treatment immediately. 

‘In 2005 I, too, contracted Lyme Disease. But now, armed with the information I had gleaned, I acted immediately,’ Helga said. Using various different protocols, herbs and supplements, she treated herself, and continues to do so. She jogs, swims and exercises extensively. Heidi now runs marathons and is a Maths graduate. 

Another mother, from Glengarriff, contacted The Southern Star, to share her family’s trauma after her daughter was diagnosed in December 2017.

‘The first real sign that there was something wrong with Rena, was when she suddenly lost the sight in her left eye one day at school,’ Sharon O’Rourke said. ‘That was the beginning of her hospital experience. But looking back, she had a summer flu at the end of August, so we think that that is when the disease was activated.’

Sharon had taken Rena to various GPs and specialists but Lyme disease was not diagnosed until she took it upon herself to send blood samples to a lab in Germany.

Rena spent 10 days in hospital after losing her sight and  had bloods taken, X-rays, CT, MRI, intravenous steroids and even a lumber puncture. The doctors ruled out meningitis, MS, lupus and other auto immune diseases and even ruled out Lyme disease.

The medical team then suggested that it was time to arrange an appointment for Rena with a psychologist. 

‘This would not be the first time that we would hear this diagnosis. What’s worse, I let them convince me that my daughter was manifesting her own illness due to stress,’ said Rena. ‘We finally had her bloods sent to Germany, on the advice of another Lyme sufferer. And lo and behold, the test returned positive.’ 

But when they went to a doctor here, they were disappointed once again. The doctor said since the HSE test for Lyme was negative in Rena’s case, she would not be treating her. ‘We left deflated. But we did find a doctor who was happy to treat Rena, and she finally started treatment on February 23rd 2018, five months after being admitted to CUH.’

Both Sharon and Hegla feel that a major national awareness campaign must be start immediately so that people are able to identify and combat Lyme disease should they be bitten by a tick.

Since our report two weeks ago, which included an interview with two Lyme disease sufferers Rory Jackson from Skibbereen and Julie Farrell from Eyeries, The Southern Star has been inundated with messages from people across West Cork and beyond sharing their experiences.

Over 12,000 people read the article on our website and  almost 17,000 people were ‘reached’ by the article, with many sharing their experiences through Facebook.

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