Living with Lyme disease

Ben Smyth of  Kinvara who suffers from Lyme disease.  Photo:-Mike Shaughnessy

Ben Smyth of Kinvara who suffers from Lyme disease. Photo:-Mike Shaughnessy

Ben Smyth who lives in Kinvara had always been healthy and rarely visited his doctor. However, everything was to change at the end of August 2006 when the father of three adult children became ill. He initially began to complain of a “pinch-like feeling” on the instep of his right foot.

It gradually worsened. Within days it began to swell and he experienced shooting pains down to his knee. He attended the A&E department at University Hospital Galway the following month, this was to be the first of six visits there.

Initially doctors were unsure what was wrong with Ben - who formerly worked in a city medical factory - and suggested it might be nerve pain. But as it worsened and medication failed to ease it they referred him to the orthopaedic department at Merlin Park Hospital - he had a pin in his leg from an earlier break and they were afraid this might be causing a problem. By this time the pain was “bouncing from his ankle to his knee”, he had not slept in days and was totally exhausted.

Nothing of concern was noted from his orthopaedic x-rays. However, his condition rapidly deteriorated within days. “I was stupid with pain, I had no concentration and had little or no power in my leg from my ankle to my knee,” he says.

He was later referred to a vascular surgeon and eventually a neurologist who diagnosed him in November 2006 with chronic Neuroborreliosis Lyme disease, a bacterial infection transmitted by the bite of hard-bodied ticks. He spent seven weeks in hospital being treated with intravenous antibiotics and having intensive physiotherapy which continues weekly. Through research his family say they discovered his condition began in 2001.

Ben, who is originally from Tuam, never remembers having been bitten, the only outdoor hobby he had then was gardening.

“As we try to figure out when he got a tick bite and where we were in July 2001 we don’t have any answers,” says his wife, Mary. “Ben’s rash, which we know is the erythema migranes EM rash, associated with Lyme disease, was misdiagnosed as a food allergy. The rash can also be an allergic reaction to tick saliva.

First episode

“Was it in July 2001 that all his medical problems began? He originally went to our GP in July - he had large red lumps/spots on his left arm, he woke up with lumps on the back of his neck, forehead, left eye and right shoulder. The GP prescribed antihistamines and steroids. Within eight hours the spots had faded but he was left very tired after that first episode for weeks.”

Ben says the damage to his system from Lyme’s disease is extensive. It includes the following:-

* Diseased nerves on his right lower leg resulting in foot drop (no feeling or control of right foot )

* Diseased nerves in right upper arm and shoulder

* Loss of tissue and muscle mass

* Weakness in right arm and leg, numbness and nerve pain

* Leg swelling and vascular dermatitis

* Chronic tiredness and fatigue, lack of concentration and sleepiness

* Pain in joints and muscles

* Bladder problems

“The neurologist told me that my condition will not get any better and that the harm that was done to my nervous system due to the delay in the diagnosis of Lyme disease will be permanent. Late stage three patients with neurological manifestations may have complications, especially if the disease is in the late chronic persistent stage, it involves the central nervous system.”

Ben struggles with his disability daily but is determined to remain optimistic, according to his wife, Mary.

“It has been almost seven years since Ben was diagnosed with Lyme disease. He lives with nerve pain, chronic tiredness and other medical conditions, including a diagnosis of prostate cancer. He has not worked since 2006 and is now on an invalidity pension. It has been a long, hard road to recovery and recognition of his disease, not being able to return to work and the financial hardship that can bring. He knows his limitations at this stage.”

What is Lyme disease?

Lyme disease (Borreliosis ) is a bacterial infection transmitted by the bite of hard bodied ticks. Not all ticks are infected with the disease, however vigilance is recommended where ticks are present to reduce the risk of transmission to humans and pets.

Lyme Disease can cause a variety of symptoms ranging from mild to severe. Named after a town in Connecticut where a cluster of cases were identified in the 1970s and known as the “Great Imitator” it can mimic other conditions such as Parkinson’s disease, multiple sclerosis, and chronic fatigue syndrome. Early treatment is vital to prevent serious complications.

Co Galway has one of the highest rates of Lyme disease in Europe. Wicklow, Kerry and Cork are other known high risk areas. Eight people, one of whom is a child, have been diagnosed with the condition in Galway, according to Mary Smyth.

Protecting yourself from Lyme disease

Prevention is better than cure. Ticks prefer areas of dense vegetation, fallen leaves and tall grasses. Walk on footpaths preferably and tuck your trousers into your socks. A repellant can be used. While this will not kill ticks it may help to repel them. Wear clothes with a shiny surface to prevent ticks from clinging on.

At the end of your walk check yourself and family members, particularly children, for signs of ticks. They may crawl under clothes for a while before seeking a place to feed. If a tick has not attached there is very little danger of infection.

Mary Smyth advises people to check in tucked away places, such as in the hair, behind the ears, in the groin area, and at the back of the knee.

“If you can, shower on your return home and place clothes in a hot dryer to kill off any remaining ticks. Check pets before they enter the house for loose or attached tics in their fur to prevent them being brought into the house.”

Mary, who is a volunteer with Tick Talk Ireland - which encourages awareness, prevention, and treatment of Lyme disase - believes it is important that more people know about the condition. It is also essential that they learn how to protect themselves from its dangers and other tick-borne diseases, she says.

For further information log on to www.ticktalkireland.org or email [email protected]

Facts about Lyme disease

* Ireland has the second highest rate of the disease in Europe with Co Galway having one of the highest rates.

* The risk of the disease in Ireland may increase as a result of climate change.

* Lyme disease is a diagnosis that is often overlooked by clinicians.

* Ticks are particularly common in Connemara, the Burren, and Portumna, according to Mary Smyth.

* Counties Wicklow, Kerry, and Cork are also known high risk areas.

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