'My daughter is asking Santa to make me better' says Cork dad with Lyme disease

FOR Alan Collins, life is divided into two parts. The time before he had Lyme disease, when he was hardly ever sick, was fit and healthy, and life was good. And the time after.

The 42-year-old, from Carrigtwohill, began displaying the debilitating symptoms of the illness just over a year ago, and reflects: “I am just like a 90-year-old man now.”

His wife, Caroline, recalls how Alan’s life began to change,

“My boss got married last October. It was a great wedding. Soon after, Alan was feverish and sweaty with flu-like symptoms. His energy levels went down.”

The symptoms escalated to serious stomach problems, joint cramps and chronic fatigue.

Eventually, he got a diagnosis of Lyme disease, which is in the rise in Ireland and globally, and is caused by the Borrelia bacterium which is spread by ticks.

“Now I can’t even pull the chair out from the table. Caroline has to take off the top of a yogurt for me,” says Alan.

“Before I got Lyme disease, I was hardly ever sick. I weighed 18 stone, maybe a bit overweight, but I was fit and healthy.”

The tick, the size of a sesame seed, hid from Alan’s immune system and attacked it at the same time, moving around his body, causing pain and co-infections in different places.

“It is unbelievable that such a small creature caused such havoc,” he said.

Alan’s life changed completely and his active lifestyle ended.

“I worked away on machinery, happy out for hours on end,” he recalls of his life before the illness.

“I’ve worked with machinery for 25 years. I love it. And I loved walking the dogs every evening.

“I’d pick up Ava from school and we liked stopping off at the playground in Glounthaune on the way home.”

Lyme disease stole all that away from Alan, causing anxiety, confusion and terrible stress, prompting chronic cramp pain, insomnia, loss of appetite and ‘brain fog’, rendering him virtually housebound.

“It has turned my whole life upside down,” says Alan, who underwent numerous medical tests and scans to try and determine his illness.

“The pain is indescribable,” he adds. “The anxiety is awful.

“I am just eating to exist. Getting up out of bed is an effort every day.

“I can just about walk five minutes down the road and back. I have turned into a sick, elderly person.”

The larger than life, cheerful, upbeat and popular man has been reduced to a shadow of his former self due to the devastating effects of Lyme disease.

“I say to Ava, some day I’ll be good,” says Alan, with tears in his eyes. “Maybe I can go back to work then, even if it’s for three days a week.

“I can’t drive and I have no movement in my right hand. All I want to do is drive my van and go to work, to get back to normality.”

Alan, a gifted mechanic, working as a Construction Plant Fitter with ECI, married Caroline, the girl of his dreams, in November, 2006.

They built the home of their dreams in the lush East Cork countryside in Ballintubber, Carrigtowhill, nestled beside Alan’s parents, Ita and Willie, and next to his brother, Sean.

When Ava arrived four and a half years ago, their family was complete and their world was perfect.

And then it wasn’t anymore.

“I remember taping a documentary on TV about living with Lyme disease,” says Caroline. 

“I had never heard of it before.”

The insidious disease takes time to manifest.

“One night, Alan was out walking the dogs,” says Caroline, recalling when things started to go badly wrong for him.

“It was raining a little bit and he wore a cap on his head. When he came back he was complaining about the pain in the back of his head, and then a pain in his back. He went to the physio and then to a bone setter.”

Nothing seemed to address the health issues.

“Alan developed a chronic cough and then, after Christmas, terrible stomach pains,” says Caroline. 

“His weight dropped dramatically but we didn’t take too much notice of that.”

When crippling pain travelled all over his body and he had to give up work, the couple sat up and took notice, realising they were dealing with something very serious.

“Alan had numerous tests and MRIs that confirmed nothing,” says Caroline. “The hospital staff said nothing showed up so they couldn’t treat Alan.

“He was tested for Fibromyalgia, Motor Neurone Disease, Arthritis, and Chronic Fatigue syndrome.”

Lyme disease is difficult to diagnose because it displays the hallmarks of many other diseases — earning it the nickname of ‘The Great Mimicker’.

“Alan didn’t show any signs of the telltale bulls-eye rash associated with Lyme disease,” says Caroline. 

“It was a very worrying time. In July, Alan spent three weeks in bed. He was in absolute bits.”

“I thought, last July, I was on the way to picking out a headstone,” admits Caroline. “I remember a supervisor at work mentioned Lyme diseases to me. Alan said, ‘Don’t tell me that. I don’t want that’.”

When the couple still couldn’t confirm a definite diagnosis of Lyme disease, at their wits’ end, they sought the advice of Phillipa Schwalbe who practices Biomagnetic Pair Therapy in Bartlemy.

She treated Alan with magnets and he said: “Phillipa advised taking effective supplements and gave me a form of kefir to take, as well as giving me valuable dietary advice.

“Lyme disease thrives on gluten, yeast and sugar.

“Philippa knew I had the disease. I had no diagnosis until I went to her. She was my saviour. I couldn’t get out of bed before I met Phillipa. She treated me on the spot. After a time, things calmed down. I felt better; things quelled a bit.”

But things were far from being back on an even keel.

“A contact who had experience of Lyme disease told us about a blood test in Germany that tests for over 30 strains of Lymes,” says Alan.

“There is no reliable blood test available in Ireland. The lack of awareness of Lyme disease, not just by the general public, but also GPs, is frightening.”

The blood tests came back positive. Now the couple knew for sure the animal they were dealing with.”

Caroline tried to get Alan seen in Dublin, but had no joy.

“We sourced a doctor on the grapevine in Germany, who assessed Alan and treated him for Lyme disease based on his blood results. Alan is travelling to Germany again. There is no help here for it.”

The upheaval that his condition has caused has taken its toll on the Collins family in more ways than one. Treating Lyme’s disease comes at a price.

“Medications, the antibiotic, Doxycyclin, health supplements, physio visits, chiropractor visits, travelling to Germany; the bills all mount up,” says Caroline. “My employers have been very considerate giving me time off work.”

Alan’s family and his colleagues at ECI and in the wider agricultural community have been very considerate too. They are rallying round the popular Carrigtowhill man.

“Alan is known as the Good Samaritan,” says Caroline. “If anyone is stuck; he is the first to help. He is such a hard worker. If there were 40 hours in the day, he’d work for 38 hours, walk one hour and sleep for one hour!”

Carrigtowhill came alive on Sunday, November 17, with vehicles of all shapes and sizes taking to the open road when the town’s Vintage Club held a fundraiser, a massive Winter Road Run, to help out their close friend and neighbour.

“Alan is well-known for helping people,” says Caroline. “He’s just that type of person. Everybody is supporting him and wishing him well. They want to give something back.”

That makes Alan feel good.

“Often, my mother comes back from town and she says ‘so and so was asking for you’. That’s nice. You know, it’s hard on my parents too.”

Ava is doing her bit too to get her dad back to his old jolly self.

“She said she’d ask Santa to make me better,” says Alan.

The future is uncertain, but a glimmer of hope glows for Alan and Caroline. His van is parked up outside the front door on the Tarmac waiting for him. The two huskies are waiting patiently to be walked.

“I’m like a good car with a sh*t engine!” says Alan, showing that his good humour is still alive and well.

“I hope there’ll come a day when I can get back into my van, get back my strength and do a day’s work. I’ll keep motoring and keep my spirits up.”

ABOUT LYME DISEASE

LYME disease is on the rise across Ireland and globally, yet many people believe they’re unlikely to be at risk — or don’t really know what it means.

Experts are warning, however, that we could be just as likely to get bitten by an infected tick whether weeding in the garden or hiking in the countryside. They can be carried indoors by pet cats and dogs at various times of year too.

Catching and treating Lyme disease early is vital, or symptoms can become chronic and very hard to manage — yet awareness is still low even among many doctors.

As part of a recent conference in London last month, entitled ‘Calling Time on Lyme’, Dr Joshua Berkowitz, medical director and founder of the Lyme Disease Clinic UK (lymediseaseclinic.co.uk), outlined nine things he thinks everyone should know...

1. Hard-to-treat symptoms

“Lyme disease is a challenging condition to treat. After a tick bite, the bacterium moves very quickly through the body and is highly resistant to the immune system,” said Dr Berkowitz.

“Symptoms can be flu-like, fatigue, joint pain, headaches, fever, swollen lymph nodes, heart palpitations, neurological shakes and weakness.

“Some also experience memory loss, mental confusion, anxiety, depression and panic attacks.

“Keeping alert to odd descriptions or combinations of symptoms from patients and keeping Lyme disease in mind could help doctors pick it up more quickly.”

2. Misdiagnosis is common

“Lyme disease is known as the great imitator because its symptoms are so varied — even from patient to patient — and can be similar to other illnesses, such as fibromyalgia, chronic fatigue syndrome, multiple sclerosis, Alzheimer’s disease and Parkinson’s disease, and also illnesses like depression or flu.

“The risk of misdiagnosis is that if someone is treated for another disease — for example, prescribed steroids for MS — that can exacerbate Lyme disease symptoms. Accurate diagnosis of Lyme disease is therefore a priority.”

3. Cases are increasing

Last month, the HSE confirmed a ten-fold increase in the number of patient samples being positive after first-stage testing for Lyme disease in the Cork/Kerry region alone, in just over a decade.

Figures released by the HSE under the Freedom of Information Act showed the number of first-stage, positive results for the disease from blood samples submitted to CUH rose from 44, in 2007, to 425, in 2018.

Dr Berkowitz adds: “In the UK, The NHS estimates there are now 3,000 Lyme disease cases diagnosed annually, although support groups believe the figure is much higher, with reports in 2019 already estimating approximately 9,000 new cases.

“The disease infects between 650,000 and 850,000 Europeans every year, and cases have quadrupled in the last 12 years around the world.

“The number of cases in the UK is predicted to rise annually as the disease becomes more prevalent across Europe, with warmer weather attributed to climate change providing the ideal environment for ticks.”

4. False negative blood tests confuse people

“There’s a very small window of time, between around 10 days and six weeks, when a blood test is likely to be accurate for diagnosing Lyme disease. At this early stage of the disease, the first line of attack — IgM immunoglobulins, which the immune system produces to fight the infection — will be detectable.

“After two or three months, the second line of attack, IgG immunoglobulins, will be active and the antibodies they create to defend the body against more persistent infection will be detectable. If a blood test is done too soon after infection, the IgM may not show up, hence the timing of a blood test is crucial for the most reliable outcome.”

5. It’s only curable if caught early

“Lyme disease can be cured if it’s caught early and treated aggressively with antibiotics. But if it isn’t caught early enough, the Lyme disease will become established in the body and the patient will suffer from the chronic form of the disease.

“Once chronic Lyme disease has taken hold, specialist treatments can help ease the symptoms and people can enjoy periods of remission, but relapses are common. There’s now a growing awareness that chronic Lyme disease exists and experts are working to improve the speed and quality of diagnosis and find successful treatments.

“A barrier lies in the way chronic Lyme disease isn’t yet fully recognised by the medical profession.”

6. Ticks aren’t just an outdoor/summer problem

“Ticks survive cold weather and you may be bitten in the winter.

“In addition, if your dog or cat has ticks, they can transfer to you, so checking pets is very important and killing and disposing of the tick correctly is essential.”

7. Ticks don’t just carry Lyme disease

“Lyme Disease is debilitating enough. Even worse, most ticks carry four to six other diseases. They are said to have a ‘dirty mouth’ as they carry many bacteria, viruses, fungi and protozoans which they transmit in a single bite. In effect, when they bite you, all the bacteria they’re carrying from the blood of previous organisms they’ve bitten (including deer, squirrels, rats, dogs and cats) goes into your bloodstream causing co-infections.”

8. Not everyone gets a rash

“The classic Lyme disease ‘bullseye rash is’ only experienced by around one-in-four people. This is a strong indicator you’re infected, but not having the rash doesn’t mean you’re in the clear. If you’ve been bitten by a tick/had to remove one from your skin, you’re at risk of infection and should see your GP straight away for a course of antibiotics. In addition, GPs must consider the possibility that a patient presenting with certain symptoms may well have Lyme disease — weeks or even months after potentially being exposed to a tick bite.”

9. Everybody is potentially at risk

“People still think Lyme disease-carrying ticks are mainly found in Europe, South America and the far reaches of Scotland. But that’s simply not true — ticks are everywhere — in woodlands, city parks, your front garden.

“You’re as likely to be bitten by a tick while weeding your garden as when hiking in the Scottish highlands. People must wake up to this fact — if you suspect Lyme disease, go to your GP and explain — don’t be fobbed off.”