NIGHTMARE OF LYME DISEASE MY PAIN AND FATIGUE PERSIST 13 YEARS AFTER ILLNESS
With a recent study suggesting that the infection is more common than previously thought, Leona O’Neill talks to three NI women about their experiences of the illness
Clare McCahill (52) lives in Ramelton in Donegal and works as a photographer and a fitness instructor in Londonderry. She says Lyme disease almost killed her.
“I got Lyme disease in 2006,” she says. “I was living and working in Portugal. I started to feel unwell, a bit fluey. I didn’t really think anything of it and just went to bed for a couple of days. After about 10 days I really started to go downhill. I developed the bullseye rash on my body.
“I was incredibly tired, my joints started to stiffen up and I was feverish. I really was delirious and out of it.
“My partner Chris noticed the rash and, having read about Lyme disease in a magazine just before that, thought that might be what it was. He took me to the emergency room at the hospital where doctors said it was definitely Lyme disease. Over there they just accept it and treat you for it. There, it is a recognised illness.”
Clare says she then had ‘six months of hell’ with sickness.
“Even though I got the medication within three weeks of becoming ill it still took a hold of my body,” she says.
“All of the joints in my body were affected. My legs swelled.
My thighs and my ankles were the same girth. I couldn’t walk. That progressively moved up my body to my shoulders, my arms, my hands. I couldn’t brush my teeth or my hair or look after myself in any way.
“I had total brain fog. I had unbelievable tiredness. Most people would get one bullseye rash somewhere, but I was getting them popping up everywhere. Around four months in I woke up one day and I was covered from head to foot in these red rings. Chris put me in the car and took me to the hospital where they gave me a steroid injection.
“I remember the doctor there talking to a consultant on the phone. She said to her that she had an urgent case. The consultant said she had an appointment available in 10 days’ time and the doctor told her I wouldn’t be here in 10 days’ time. That was how serious it was. It was very frightening.
“They were talking about doing a full blood transfusion, replacing all of my blood to try and clear the infection from my system. Looking back, it was terrifying.”
Clare says that after six months her symptoms began to ease a little but she has been left with chronic fatigue and joint pain.
“I still had the pain and the brain fog,” she says. “I have mood swings, depression and everything that goes with illness. And that probably stayed with me for five years. I still suffer from joint pain and fatigue, I still get depressed, still have the mood swings at times.”
Clare says people need to take the disease more seriously.
“My thing has always been awareness,” she says. “If people know that it is out there, and they know what the symptoms are, they know what to look out for. If you have been bitten or have cause for concern then get to a GP who will take you seriously and give you antibiotics. Even before you get the blood tests.
“I was tested for Lyme and the tests came back negative, even though it was obvious to the doctors that I had the disease. The tests were negative because there are different stages in the bacteria’s life cycle and if your blood test does not hit it at the right stage, it doesn’t register.”
‘My symptoms were terrifying and I urge people to see their GP to get treatment right away’