The shocking toll Lyme disease has taken on these Northern Ireland people's health
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.
'I was bitten by a tick four years ago and I still have aches and pains, heart arrhythmias and dizziness'
Fitness instructor Nichola McMillen (39) lives in Bangor with her 10-year-old daughter. She was bitten by a tick in Donegal four years ago and developed Lyme disease.
"I used to do a lot of mountaineering," she says. "I was out climbing hills in the west Donegal area and I noticed a big bullseye bite rash on my thigh one day and thought that I had taken a really bad reaction to a bug bite.
"I noticed another one and they got worse and worse over a couple of days. I started to feel a bit off, and a bit sick, however I didn't put it down to anything and came home and carried on with life.
"But I started to get more tired and have more ailments. It was only months later that a friend of mine was reading in a mountaineering magazine about Lyme disease and it had a photograph of exactly the same bullseye rash that I had. It said that Lyme was now sweeping Donegal.
"I was so worried that I went to my GP surgery and said I hadn't been feeling well since being bitten and having the rash. But a doctor told me that since they hadn't seen this rash with their own eyes, then there was nothing really they could do (Nichola's rash had faded by the time she visited her doctor).
"That was four years ago and since that time I have just got sicker with lots of different things going on. I was so fit and healthy before and now I am really sluggish from head to toe. There is something that I am being investigated for but they can't really find out what is going wrong."
Please log in or register with belfasttelegraph.co.uk for free access to this article.
Nichola says that she is frustrated by the fact that animals are well treated for Lyme and humans don't seem to be.
"The doctors here seem to vary greatly on their opinion of Lyme disease and their belief on how prevalent it is or isn't," she says. "Some doctors have told me that Lyme doesn't exist in Northern Ireland. Others have said that they 100% agree that it is here, but that their hands are tied with regards NHS guidelines.
"So many people have contracted Lyme disease but haven't had it diagnosed at the time and years later it is in their tissue, their heart muscles, their brain and it's just that hidden illness that is eating away at things.
"But to get treatment for that seems to be nearly impossible. I know a lot of people who are paying thousands of pounds to go to America and Germany to get long-term IV-antibiotics and herbal treatments privately.
"I looked at those options and I couldn't justify spending the money on something that might or might not make me feel better. What sickens me the most is that our animals are treated for Lyme disease here if they get a tick bite. Humans don't seem to get that."
Nichola says she still lives with the effects of Lyme disease four years on.
"I am living with this now," she explains. "The fatigue is unreal. Even when you have had a full night's sleep you are just so, deeply exhausted. I have confusion, it's like a brain fog. There are aches and pains, and inflammation of the joints. There are heart arrhythmias and skipped beats and dizziness and lots of things that you cannot really put your finger on necessarily and the doctors can't give you one diagnosis for what is causing all of it.
"Lyme has left me a different person," she adds. "I know I am very lucky compared to a lot of others I know who are literally bed-bound with it. I know a couple of girls who are in wheelchairs because they are so debilitated with it."
‘My symptoms were terrifying and I urge people to see their GP to get treatment right away’
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
“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.”
‘I was doing well in my job when I became ill, but I have had to take two years off work and spend £500 a month on medication’
Ciara McMenamin (30) lives in west Belfast with her partner Kate. She says she hasn’t been able to work for two years due to the disease and had to access private healthcare to be diagnosed.
“I was a business development manager and was doing really well in my job,” she says. “I was really fit and took sick after coming back from a business trip to Barcelona two years ago. I had flu-like symptoms and I never recovered.
“I started to have fits, my muscles started to spasm and I got a really bad face pain and the whole left side of my face had drooped. I looked like I had taken a stroke. When I went to hospital they thought it was viral and sent me home.
“I didn’t get better. It would happen when I ate sugar, or drank anything with alcohol in it, just all these random things — I would get pain instantly. And the pain was just constant. They told me it was shingles, then trigger neuralgia and they gave me anti-epileptic drugs and painkillers.
“I knew I didn’t have any of the things they were telling me I had and I was getting worse as the days went on.
“Then I went private and sent my bloods off to the London Clinic of Nutrition. They sent them to a private clinic in Germany and it came back positive for Lyme disease.”
From then, Ciara was able to get treatment. She says she was grateful to be able to get herbal and antibiotic help in a private Dublin clinic. Others, she says, are not so lucky.
“I think that a lot of people who think they might have Lyme go to the NHS and are told they don’t,” she says. “They don’t have the money or the resources to go private.”
Two years on from contracting Lyme disease, Ciara says it still impacts greatly on her life. “It costs a lot of money if you want to get better,” she says. “It’s almost £500 a month for medication.
“I am getting there now. The pain used to be a 10 out of 10 and now it’s maybe a two. But I have been constantly taking supplements and watching what I eat and looking after myself. I have had to take nearly two years off work because of this.
“I was 28 when this happened to me. I was doing really well in my job. I didn’t want to be sick, I didn’t want to be at the hospital wondering what was going on with me.
“I would call on the NHS to take it more seriously. People are really sick. Lyme disease goes to your tissues, your joints, your vital organs and it wrecks your immune system.
“It is easily fixed. Why have someone on painkillers and tablets that will cost the NHS millions per year? Why not treat people for a year with antibiotics and make them better? It doesn’t make sense.”
Beware the tick
A study published in BMJ Open found that the incidence (number of new cases per year) of Lyme disease in the UK is about threefold higher than previously estimated. The study showed that, in Northern Ireland, the incidence rate from 2010-2012 was 6.3 cases of disease per 100,000 population — a lower rate than most of the UK.
Lyme disease is a bacterial infection passed on through being bitten by an infected tick. The small spider-like ticks often feed off the blood of animals and are typically found in dense areas with moist vegetation. People contract it by brushing against vegetation where an infected tick is waiting for animal or human blood.
The disease has many symptoms, making it hard to diagnose. Early symptoms can be similar to those of flu, including aching, fever, headache, fatigue and sweating. Patients can also experience light and sound sensitivity, abnormal skin sensations such as tingling, numbness, itching, and neck stiffness. In many cases, a patient will develop a circular ‘bullseye’ red rash around the bite. If caught early, most bites can be treated successfully with antibiotics but, left alone, infection can lead to permanent damage to the joints and nervous system.
Visit your doctor if you’ve been bitten by a tick or if you’ve visited an area within the past four weeks where infected ticks have been found and you have developed flu-like symptoms.
How to stay safe
The Public Health Agency NI has offered the following advice to avoid being bitten:
- Walk on clearly defined paths to avoid brushing against vegetation where ticks may be present.
- Wear light-coloured clothing so that ticks crawling on clothing can be spotted and brushed off.
- Use an insect repellent that can repel ticks and prevent them from climbing onto clothing or attaching to skin.
- Wear long trousers and long-sleeved tops to reduce the direct exposure of ticks to your skin, making it more difficult for them to find a suitable area to attach.
Most ticks don’t carry the infection, but if you find one they can be removed carefully with special tweezers, in the following way:
- Remove the tick by gently gripping it as close to the skin as possible.
- Use a pair of tweezers that won’t squash the tick or use a tick removal tool (available from pet shops or vets).
- Pull steadily away from the skin without twisting or crushing the tick.
- Wash your skin with water and soap, and apply an antiseptic cream.
- Don’t use a lit cigarette end, a match head or substances such as alcohol or petroleum jelly to force the tick out (as this may cause the tick to regurgitate potentially infected material into the skin, which may increase the risk of infection).
For more information on Lyme disease, visit www.nidirect.gov.uk/conditions/lyme-disease, www.nhs.uk/conditions/lyme-disease and charities like Lyme Disease Action at www.lymediseaseaction.org.uk. To see the BMJ Open study, visit www.bmjopen.bmj.com/content/9/7/e025916