Living with Lyme Disease

WE all know the feeling - shivers, aches and pains and a tiredness that crashes over you like a wave. Most of us are unlikely to escape a bout of flu in our lives.

In the days before COVID the vast majority knew that they could bunker down and within a week or so they would be well on the road to recovery.

But imagine feeling like that every day of your life. Imagine that was how you felt on ‘a good day’.

Unfortunately that level of discomfort is a fact of life for Randalstown woman Kelly Stewart.

However, when she developed these flu-type symptoms while backpacking in Thailand and Australia 15-years-ago, little did shoe know t

he horrific health problems she would face over the next decade.

Kelly was completely unaware that she had been bitten by a tick and was showing classic signs of Lyme Disease - a debilitating condition that one scientist had called ‘the AIDS of our time’.

“Looking back, I developed the typical bulls eye rash that some people get, but at the same time I thought it was just a mosquito bite and I pushed on through the flu symptoms and palpitations because I was on holiday,” Kelly told the Antrim Guardian in a candid interview in 2017.

After six months away, Kelly returned home and suddenly found herself in and out of the doctor’s surgery on a regular basis.

But around seven-years-ago her troubles worsened when she was crippled with chronic fatigue and diagnosed with suspected depression before being put on anti-depressants.

“I tried to push on,” said Kelly.

“I was very fit and active. I worked. I had a child. But it just got progressively worse.

“I had pain all over my body and I might have had three good days and then a couple of bad days.”

Kelly was referred to neurology, immunology, ENT and internal medicine in a desperate bid to get to the bottom of her alarming symptoms.

She began to develop severe allergic reactions. Her face began to swell up. She suffered tinnitus in her ears. She had problems with her balance and vertigo.

Terrifyingly, she also suffered from short-term memory loss which saw her trying to put shoes in the fridge and bleach in the washing machine.

There was numbness in her arms and legs and concentration problems.

Forced to leave work on the sick, she was so weak that at her lowest point she couldn’t even carry on a conversations and had to crawl around her house on her hands and knees.

“I thought I was going crazy to the point where I referred myself for counselling,” she said.

“Doctors told me they couldn’t find anything wrong and then I developed hypothyroidism and pernicious anaemia.

“I then saw a picture of the Lyme rash online and it all clicked. I thought I had found what was wrong with me, even though I could not believe it had started so long ago.”

Kelly’s hopes for a swift diagnosis were shattered, however, when a consultant who ‘reluctantly’ tested her for the disease revealed that her bloods were negative for Lyme.

Devastated, Kelly kept researching and learned through sites like the Northern Ireland Lyme Disease Support Group that the NHS test ‘misses 40 to 50 per cent of cases’. An alarming statistic by any standard.

Through this group, Kelly learned about Armin Labs, a specialist outfit in Germany where she could pay for a private test.

Three-years-ago she scraped together the money and she was finally told that she had test positive for a ‘chronic active infection of Lyme Disease with chronic immune suppression’.

“I finally knew what was wrong and it all made sense,” an emotional Kelly recalled.

“Lyme Disease invades your body and creates carnage.

“It gets into everything - blood, muscles, cells - and damages your whole system. It’s in my nervous system.”

Acutely aware of the limitations medical professionals in the province face because of NICE guidelines and an ‘inadequate’ testing method, Kelly has had to find money for private treatment with a consultant in Dublin.

She paid hundreds of pound every month for private prescriptions to try and reduce the bacterial load in her body - but has been forced to come to terms with the fact that there is no simple cure in most cases.

“I have no idea what the future holds,” she said three-years-ago.

“I’ve been losing my hair and I’ve gone through early menopause but there are other people - even children - who are wheelchair bound and suffer seizures.

“People may have heard of Lyme Disease but they have no idea how serious it is and the way that it invades your body.

“You get it through a bite from an infected tick and it’s a corkscrew shaped bacteria which can cross blood and brain barriers.

“It’s the most complex bacteria known to man and one scientist called it the ‘AIDS of our time’ because of how devastating it can be.

“People think of the large ticks which you see on a dog but some are tiny. The nymph tick is only the size of a poppy seed.

“It’s known as the great imitator as its symptoms are non-specific and can imitate so many other conditions.

“People have been wrongly diagnosed with chronic fatigue syndrome, fibromyalgia, MS, depression, Parkinson’s and dementia.

“NHS tests are not reliable and doctors need more training and resources to investigate it based on symptoms.

“It can kill you and people have taken their own lives because they cannot cope with it.”

Kelly is full of praise for local GPs who have ‘tried their best’ to get her the help she needs - even though their ‘hands are tied’ by guidelines.

“There is ongoing campaigning to change these guidelines and bring in the testing which is available in America and Germany.

“Surely it would be more cost-effective to test and treat Lyme Disease properly than waste money on all these other conditions I’ve been investigated for?

“I might have been able to retain a little bit of my health and dignity too if that wee the case.”

While many sufferers are left to seek private treatment at staggering and frankly unaffordable costs, Kelly hoped that publicity being raised by sufferers like rugby hero Matt Dawson and singer Avril Lavigne would cast a light on the condition.

There are also a number of support groups and charities which are doing their best to help those affected, despite being swamped with pleas for help.

“We have the forest on our doorstep and ticks really can be found anywhere.

“People must be aware of this and check themselves and their children for any signs of bites.

“I hope that by speaking out, it will make people more aware of the disease and just how serious it is.

“I’ve been left like this at the age of 39 and I’ll never be the person that I was but if you get intravenous antibiotics immediately, then you have a much better chance of making a good recovery.”

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