'We had the world at our feet... I never in a million years thought that one little insect bite would literally wipe me out and destroy my life'
Shirley Moran Breslin had just got married. Her husband Enda set up a new business. They had the world at their feet.
But then, their lives were turned upside down by an insect bite.
"Believe me I never in a million years thought that one little insect bite would literally wipe me out and destroy my life," Shirley told The Sligo Champion.
She was bitten by an insect in 2010.
She developed a bulls eye rash which is a typical sign of Lyme Disease. Her leg began swelling and there was no sign of it reducing. She became concerned that it was more than just a rash.
"I decided to go to the doctor because it wasn’t reducing and it was starting to go black in parts. My doctor wasn’t worried about the rash and prescribed steroids. The rash wore off and I forgot about it," she said.
Some weeks later, Shirley heard a discussion on the radio about Lyme Disease. She went home, spoke to Enda and looked up details about the disease online.
"I decided to get a test done in a clinic in Dublin. There was no point discovering when it was too late that some simple antibiotics would have stopped an infection in its tracks.
"Off I went for a check up. I had the test done - it was subsequently sent to France and returned negative. . What I didn’t know was that I went for this test too soon as it takes time to develop in your system."
Shirley began having muscular skeletal problems sometime after this. All sorts of strange things were happening, like not being able to turn a key in a door, losing power in her hands and more.
She ended up being diagnosed with Fibromyalgia.
"I even tried a clinic in Australia on a visit to see if perhaps they could help me. I was trying every avenue I could think of. I didn’t really seem to get relief from medication. The exhaustion got progressively worse, I had severe night sweats, memory loss, confusion, loss of balance/coordination. This was a great start to married life."
The muscle spasms began in 2014. Shirley couldn’t go anywhere as she needed to be able to rest.
"It wasn’t the same as just being tired it’s like every cell in your body has no energy whatsoever. I thought this was in my head and maybe I was just lazy. I couldn’t exercise and gained weight even though I wasn’t eating huge amounts of food.
"Enda broke some ribs which ended up being a ‘God send’ as on a visit to a physiotherapist he asked about any treatments or therapies that may give me some relief. They ended up discussing Lyme Disease and when he came home we decided to give this another
look into. I had changed doctor at this stage. I arranged for a new blood test and waited for the result."
The results came back negative through the Irish lab so Shirley decided to explore and avenues and sent bloods away to Germany. These results came back positive.
"We looked at options and booked into the BCL Clinic in the Czech Republic for a consultation in early January of 2015. I needed to start treatment asap as I was having difficulty in walking, my speech was starting to be affected as well as my co-ordination, reading, muscle spasms, chronic fatigue, pain in muscles, joints and bones as well as a myriad of other symptoms.
"We went back out to start the compact/ intensive treatment for 3 weeks at the end of January 2015 after starting a number of supplements, blood tests etc. The clinic’s staff were absolutely amazing and we ended up spending an extra week for continued treatment as part of the doctor’s advice.
"We had to make a number of return visits for check up appointments and to monitor/alter medicines as needed. I also need to have regular bloods and ECG tests with my own GP. We continued travelling over and back until early 2017 when I received an email from my consultant to say the clinic was closing down. This was a devastating blow for us to receive.
"So we were now faced with a new dilemma of what was our next step. I continued with the schedule of medication I was on, tried alternative therapies and completed three months of hyperbaric sessions as this can often help with MS type symptoms."
Shirley began attending a pain specialist in 2016 in Galway. She started receiving infusions, drips and injections of the drug lignocaine to try and control pain.
Unfortunately, she started to regress from last November. Symptoms that had calmed returned and others flared up dramatically.
"I could often sleep for 17+ hours a day or perhaps go through 3-4 days of no sleep whatsoever. I have no control over my body as to when I sleep or wake. I have day and night sweats. These cause me to have to change clothes many times in the day and night, even using towels in bed and that is not pleasant. I try not to complain if at all possible and anyone who knows me would say I’m an optimistic person."
Shirley now feels as though she has no alternative but to go abroad for treatment. Soon she leaves for Cyprus to undergo intense treatment:
"I’m on an invalidity pension and my husband is self employed. This means Enda has to close up his crash repair business as he has to accompany me to the clinic on a daily basis. Saying that he’s essentially my carer here at home anyway. Its not easy on him trying to keep everything going from week to week. I can only imagine how he feels.
"We had the world at our feet. I loved my job, Enda started a new business, we got married and decided to wait a year to go on honeymoon. The honeymoon came around and I could barely walk. Enda had to sit in the hotel room not knowing when I’d wake up and all the while we knew that when we returned home all we had ahead of us was treatment and bills.
"But we’d do anything to get a sliver of the life we had. As I can only deal with this at hours at a time I cant plan to meet friends even for a cup of coffee and a chat. Thankfully we have great support from family and friends."
Shirley feels as though the required help is not available here in Ireland.
"There’s little or no help for people with this disease here in Ireland. For the last few years doctors from Germany, USA, Holland etc have been coming over to Lyme Disease patient conferences here at their own expense to try and spread awareness, help with testing and information. Really and truly we should have facilities here to deal with the disease.
"This is not a disease that you just get abroad. It's here, its now and its very real. Lyme Disease totally and utterly destroys peoples lives, both adults and children."
She wished to advise anyone who has been bitten by an insect to go to their GP before it is too late: "If you find you have been bitten by a tick (or any blood sucking insect - Mosquito’s, horse flies etc) and develop a bulls eye type of rash please take a picture, go to your GP and get antibiotics, take them and continue for a minimum of 6 weeks."
What is Lyme?
One of the fastest growing vector borne diseases worldwide. It is a bacterial disease (borrelia) transmitted by ticks, mosquitos, lice etc. There are over 300 symptoms for Lyme. It can affect every organ/system in the body. Typically, you will get more than one disease from a single bite (anaplasma, babesia etc). The resulting diseases are equally as devastating on the body as Lyme.
Where is Lyme found?
Every county in Ireland. Lyme is found in infected ticks that are carried by mice, birds, sheep, pets, allowing dispersion of disease throughout the country. Deer are not the only animal to carry infected ticks. Ticks and other infected insects can also live in woods, long grass and leaves.
Who gets Lyme?
Lyme does not discriminate. Children are at the highest risk.
How to treat Lyme?
Acute infection (short term) less than six weeks - immediate antibiotics.
Chronic infection (long term, more than six weeks) - More complex due to multi-system involvement.
Diet/lifestyle changes can have a positive impact for many people along with more intensive treatment.
Tips for bite prevention
Use repellent, tuck in trousers, tick check.
Why should I be Lyme aware?
Lyme is known as ‘The Great Imitator’. It shares symptoms with arthiritis, MS, Crohn’s/ IBS, Alzheimer’s, CFS/ME, Anxiety, Fibromyalgia, Autism, Depression. Many people diagnosed with an insect-borne disease do not remember being bitten.
Acute/immediate symptoms include:
- Joint aches
Chronic/long term symptoms include:
- Children Adolescents Adults
- Cognitive issues
- Anxiety Anger Memory issues
- Irritability Depression Light sensitivity