The ongoing nightmare of living with Lyme disease

Galwaywoman ROISIN COYLE contracted Lyme Disease five years ago after being bitten by a tick. In this article, she recounts the horror of the condition and advises on how people can take steps to avoid tick bites.

May is Lyme Disease awareness month so I thought I’d write a little bit about it, my own experience of it and how to prevent it.

It was Dr Joseph Jemsek who said that “Lyme has no peer or precedent in human illness because of its unique ability to disassemble the human nervous system.” Lyme disease is an extremely serious debilitating disease with a huge range of horrible symptoms. It is spread through tick bites and there is a huge lack of awareness about it in Ireland still.

I am writing this because there is a widespread belief that Lyme is extremely rare. Every single week I meet someone new who has lyme or knows of someone who does, a friend, brother, wife, cousin etc. The majority of people seem to think that Lyme is only a problem in areas where there are deer. This is not true. Birds, mice, sheep, foxes, dogs, and many more creatures now carry lyme ticks.

The people I know who have lyme disease were bitten in Kinvara, Clare, Spiddal, Carraroe, Moycullen, Connemara, many of the islands, Kilkenny, Kerry, Mayo, Cork, Donegal, even on Sandymount strand in Dublin, basically everywhere. Not every tick carries Lyme disease, but it seems that more and more of them do. Data gathered by the World Health Organisation indicates that the number of cases of Lyme in Europe has increased, on average, by 65 per cent every year for the past 20 years.

I got bitten in 2013 in Co Clare. I took the tick out with a tweezers and I had a red mark around the bite for the next ten days or so. At the time I wondered whether I should be worried. I googled lyme disease and my mark did not look like the text book bullseye mark they say to look out for so I thought no more about it. I now know that less than 50 per cent of bites have the bullseye rash.

Three years in bed

I thought no more of it and got on with my life. I was really healthy at the time, had a very busy life working as a full time artist, running and surfing a few times a week, climbing mountains, tons of energy so I was a bit cocky that I would be fine.

Lyme disease can lie dormant in the body until the immune system is suitably weakened through stress or a traumatic injury such as a car crash. In my case it was a whiplash injury from a car incident two months later and pretty soon after I started feeling flu-like symptoms. I thought it was just a really long flu that I couldn’t shake. After a few doctors’ visits I was diagnosed with glandular fever. I didn’t really feel that this fit the bill but I assumed the tests were correct.

The next three years were spent in bed, I could get up for about an hour a day, two on a good day but my fatigue and all the other symptoms were nightmarish. I went from being so healthy to not being able to walk more than five minutes, having to sit down while I brush my teeth because it is so tiring, having to go back to bed for two hours after having a shower due to exhaustion. It is unimaginable.

I went from consultant to consultant to be misdiagnosed again and again. I was told that I had ME, chronic fatigue and another consultant suggested I see a psychologist. I kept bringing up the tick bite and asking whether it could be Lyme but this was dismissed as the tests for Lyme showed negative.

The tests used in Ireland are completely inadequate and only show up 30% of Lyme cases. Last year I was finally correctly diagnosed with Lyme disease and accompanying infections through a German Lab and have since been seeing a great Lyme and infectious disease consultant in Dublin in the Mater Hospital. I have been on heavy antibiotics for a year and have made an improvement.

Great imitator

They call Lyme the great imitator. It mimics a host of other conditions including chronic fatigue syndrome, arthritis, fibromyalgia, dementia, Parkinsons and multiple sclerosis. It can hit in so many different ways; it can attack the heart, the nervous system and all the organs including inflammation of the brain.

My own symptoms are endless, not a day goes by that I don’t experience 50-75% of the following symptoms, extreme chronic exhaustion, brain fog, memory loss, fever sweats and extreme flu like symptoms, extreme sensitivity to noise, tinnitus, vertigo, muscle weakness, inflammation of the cranial nerve, a horrible fizzing feeling throughout the body, a feeling that all my cells have been poisoned, my vision has been affected, migrating joint pain, heart and liver problems.

I have lost my sight completely a few times, I experience cognitive problems where it is really difficult to follow anything, a story, film, conversation, instructions. There are many more symptoms associated with it.

I will do anything to get back to a full life and I will never stop trying to get well and restore my former health. Life as I knew it stopped when I got ill. The past four years I have been unable to work, travel, meet friends or do anything that a normal healthy person takes for granted. I am mostly in bed. It has been like living a strange fairytale, like being stuck in ice watching life go by.

The reason that I am writing is because if caught early, Lyme disease is totally curable and chronic lyme is preventable. That’s the good news. If you have been out in the countryside, or even if you’ve been gardening at home, check yourself or your children for ticks.

They hide in pretty sneaky warm places on the body so be thorough in your checks. The only correct way to remove a tick is with a fine tweezers, at the tick’s head and pull gently until it releases. Do not burn it off with a match or suffocate it with vaseline etc. as this will only cause the tick to get rid of all its pathogens into your body. If you do see an unusual mark after a tick bite or you think you may have been affected contact Tick Talk Ireland, or see www.ticktalkireland.org Their help has been absolutely invaluable to me.

The 2018 National Lyme Disease Conference takes place in the Astra Hall in UCD on Saturday June 2 when Dr Joseph Jemsek will be the guest speaker. More details on www.ticktalkireland.org

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