'There is light at the end of the tunnel' - Woman (24) diagnosed with lyme disease
When Sara Donohue got sick, no one seemed to know what was wrong with her. But, she tells Joy Orpen, she was eventually diagnosed with Lyme disease. Her subsequent journey back to health was long and arduous
There's nothing Sara Donohue (24) likes more than being outdoors. And living in Royal Oak, Co Carlow, with her parents and a younger sister, means she has plenty of access to nature
The smell of the trees, the soft earth underfoot and the gentle gush of a stream all inspire her. But she also likes to challenge herself, whether that be completing tasks for college, or writing a book. Yet, there was a time when all Sara could manage was to lie on the couch, all day long. Even worse, she didn't even know why she had been so totally floored by illness.
Her ordeal began in late August 2012, when her leg became swollen. The first doctor she saw suspected it was an over-reaction to an insect bite and prescribed medication. "That seemed to calm it down," she says. But she still wasn't well, so her mother asked that Sara be tested for Lyme disease; however, that test came back negative. "Some weeks later, I started to feel totally exhausted and began to miss days at school," Sara says. "So I went back to the doctor and was diagnosed with post viral fatigue syndrome (PVFS)."
She was then told she would have to spend four weeks resting at home, which was a shock, given she was in her Leaving Cert year. However, even though she did take the time off, she felt even worse afterwards and couldn't rejoin her classmates. "I developed massive intolerances to gluten, dairy, soya, sugar, fish and many other foods," Sara says. Fortunately, she was still able to tolerate a little meat and some vegetables.
For 18 months, Sara and her distraught family did their utmost to get to the bottom of her debilitating condition. "I was so sick, so zoned out, I didn't really know what was going on," she says. "My poor parents went through the mill, driving me all over the country, looking for any treatment that might help. They were just amazing."
Having consulted a number of doctors, Sara's symptoms were given many labels, among them chronic fatigue syndrome, myalgic encephalomyelitis (ME) and fibromyalgia. Eventually, a family friend heard a talk by Ann Maher, a Kilkenny resident who had been living with Lyme disease for over 20 years. "She said Ann's symptoms sounded very like mine. So, we contacted Ann, and as a result, we sent a blood sample to Germany," Sara says. "It tested positive for Lyme disease, which is an infection caused by bacteria known as borrelia burgdorferi. With this, you can also get lots of co-infections, which means people can have different symptoms."
Kerry Lawless, who has lived with Lyme disease for 12 years, and who volunteers at Tick Talk Ireland, confirms this disease is caused by borrelia bacteria, which is spread by ticks. "The bacteria is shaped like a corkscrew [called a spirochete] which enables it to burrow through body tissue, which most other bacteria wouldn't be able to penetrate."
She says the first obvious sign may be a bullseye rash (outer and inner red circles) at the site of the bite. However, the rash only manifests in about half of affected patients. Chronic flu-like symptoms and fatigue are usually experienced soon after. If an infected tick bite is discovered early enough, antibiotics may prevent further problems. However, if Lyme disease goes undetected, it can get totally out of hand.
Unfortunately, Sara ended up with full-blown Lyme disease. Following her diagnosis in 2014, she then travelled to Germany for treatment, expecting to be put on strong antibiotics; but they said she was already so sick, it would be too risky.
"All I could do at that point was lie on the sofa all day long, wearing a tracksuit and several different tops while covered in blankets, and I was still cold. Meanwhile, my parents were roasting," she says. "With Lyme, if any bug is going around, you'll get it. Tummy bugs, flu, or whatever. For example, I got pneumonia, and that's quite common with Lyme."
Sara's doctors in Germany recommended a number of special supplements. She kept a timetable on her wall to remind her to take certain things at particular times of the day. It was very much a case of trial and error. So, she kept trying different combinations until she began to feel better.
By 2016, this protocol was working so well that Sara began to feel bored, which suggested her health was improving. So, she settled herself on the sofa with her laptop and started writing a story. "It was prompted by fantastic yarns told to us by a family friend, when we were children," she says. "One of them was about a tunnel that runs from a church to an old abbey. I based my story on that."
That story turned into a recently published novel called The Tunnel. It was written for pre-teen children, and has two main characters who end up living in the same house, but 50 years apart. While the plot is steeped in mystery and intrigue, it does focus on personal achievement and the fact that life isn't always straightforward. It also touches briefly on Lyme disease.
Sara believes she and many patients like her suffer lengthy periods of illness unnecessarily, because the test for Lyme disease in Ireland is unreliable. "It's based on the presence of antibodies," she says. "By the time I was tested, my immune system had already shut down, so I didn't have any antibodies. There is no truly accurate test for Lyme disease. But the German system uses various methods of testing, and that gives a more accurate result."
Kerry Lawless agrees that testing here is not equal to the task. "The HSE says the two-tier testing model is accurate and can be relied on to diagnose Lyme disease. However, patient experience refutes this. Research has shown it has a 50pc accuracy rate at best," Kerry says. "Even the overly cautious UK guidelines acknowledge it is not definitive. Yet the HSE continues to insist the test is robust."
Fortunately, Sara has fared somewhat better than many others living with Lyme disease, who have to battle this devastating illness for many years. Fortunately, she is now almost wholly recovered. Currently, she is in the midst of a business degree, while enjoying a totally justified sense of achievement, having recently published her novel.
"I feel really good again," she says. "People with Lyme disease mustn't give up hope. There is light at the end of the tunnel."
For more information on Lyme disease, contact Tick Talk Ireland, see ticktalkIreland.org
The Tunnel by Sara Donohue costs €9.50. For a list of stockists, see authorsaradonohue.blogspot.com