Tuesday 19 September 2017

‘I knew there was something much deeper going on with my body’: Irish blogger (31) diagnosed after 14 year battle with symptoms

Doctors now believe Avril McDonnell was bitten by an infected tick when she was in her late teens.

Patricia Murphy

Patricia Murphy

An Irish blogger who battled for more than a decade with chronic symptoms that impacted her life said she always knew that there was something more serious going on with her body than doctors believed.

As a teenager, Avril McDonnell (31) was very active and an Irish dancer but during her Leaving Certificate year, she began to experience heart palpitations and fatigue that her GP diagnosed as anxiety.

“Really it stems back to when I was 17 just after my Leaving Cert. I began to get heart palpitations and it freaked me out, it was quite scary. My GP diagnosed me with anxiety and placed me on medication to combat that, but the situation didn’t really improve.

“I was a really active child and I did Irish dancing from the age of four until I was about 17. I just found that I was getting weaker and weaker, and quite quickly I found I wasn’t able for the high-energy sets and jigs. It just got too hard to continue with it.

Avril was diagnosed with Lyme disease in 2016
Avril was diagnosed with Lyme disease in 2016

“My college years were a constant battle with exhaustion and fatigue. I was exhausted all the time. Even a moderate gym session would leave me wrecked and my joints and bones would ache afterwards,” said Avril.

Throughout the years, Avril battled with extreme fatigue along with a barrage of other symptoms including joint pain, rashes, vomiting, nausea and insomnia which she said were continuously diagnosed and treated as anxiety and depression.

After finishing her second science degree in DIT, Avril admitted that she reached breaking point in August 2013, when her symptoms became overwhelming as she tried to cope with the pressures of a full-time job.

“I had just finished my second degree, and I had been pushing myself so hard. My body just crashed. I had been coping with these symptoms for so many years, just ploughing through them and my body couldn’t take it anymore.

“I remember the day, August 30 in 2013. I was in work, I was just so exhausted. I became so upset and I broke down. I went into my boss and said that I just couldn’t do it anymore.

“I was so frustrated because I know my body and I knew that there was something deeper going on than anxiety and depression. However, all the tests I was undergoing were coming up healthy and on paper everything looked normal. It was such a physical and mental battle for me, my mind was boggled and I was incredibly frustrated,” she said.

Avril, who had recently married her college sweetheart Kevin, made the decision to go part-time in her job, but in 2014 had to take leave because she was so ill.

The scientist’s mystery illness looked set to remain unexplained until she was recommended to a specialist in Infectious Diseases in Dublin’s Mater Hospital earlier this year.

Avril pictured with her husband Kevin on their wedding day, who she said has been a massive support
Avril pictured with her husband Kevin on their wedding day, who she said has been a massive support

“I went to so many different specialists, before I was recommended to a doctor in the Mater who specialised in Infectious Diseases and looking at my symptoms, he believed I could have Lyme disease,” she said.

The illness is a serious infection which is passed to humans through a tick bite. The bacteria has the ability to penetrate the body’s tissue, and causes a number of chronic symptoms. In serious cases the disease can cause paralysis and death.

“When an infected tick bites you, he rarely is carrying just one type of bacteria, and those who suffer from Lyme disease will often have an aligning infection. In my blood, they found a co-infection, which indicated Lyme disease but that can be much harder to detect.

 “Testing for Lyme disease is very complex, and the results are not often definitive, so my blood was testing negative for it. That’s why so many people are living undiagnosed with Lyme disease, in the same position that I was in. In September I finally tested positive for the Lyme bacterium after coping with its symptoms since I was a teenager,” said Avril.

After living with undiagnosed Lyme disease for most of her life, Avril believes more needs to be done to understand and treat this infection, which she said hasn’t been given enough research focus.

“My husband and I are both scientists so we have done quite a lot of research into Lyme disease and I just don’t think it’s something that is understood enough. It’s such a complex illness and completely misunderstood. There isn’t a quick fix. Some people get better and some people never do. Frustrating is the key word to describe Lyme disease,” she said.

Avril said her illness has affected her life in other ways, and she and her husband have moved back in with her parents in Phibsborough, which she said has been a blow to her independence despite her gratitude to her mum and dad.

Avril battled with the symptoms of Lyme disease for more than 14 years
Avril battled with the symptoms of Lyme disease for more than 14 years

“My husband and I have been living together for 10 years. We recently moved back in with my mum and dad in Phibsoboro which is difficult because you are losing your independence. I’m nearly 32, this is a time in my life I should be enjoying and thinking about starting a family,” she said.

“Chronic illness messes up your life and your plans.”

Before she was diagnosed, Avril set up a beauty and lifestyle blog A Paler Shade of Beauty and said her followers have become a great support network.

“I just wanted to get across the point that, you are still you despite what you see in the mirror. You’re still beautiful when you’re sick, you’re just a paler version of yourself. No matter what illness you’re coping with, your inner beauty still shines through.

“I opened up about my battle with chronic illness on the blog and my followers were so supportive, it’s been mad. They’re all so lovely. When I disappear for a while, I’ll come back to messages asking me how I am, and if I’m okay. It’s heart warming,” said Avril.

Following the detection of Lyme disease’s co-infection, Avril was treated with antibiotics, which unfortunately damaged her liver and cause drug-induced hepatitis. The blogger revealed that one of the most frustrating things about the disease is not knowing what the future holds.

Avril started a blog 'A Paler Shade of Beauty' in 2015
Avril started a blog 'A Paler Shade of Beauty' in 2015

“I don’t really know what is in the pipeline for me. My doctors are considering going town the intravenous route but I don’t know what to expect. I’m trying to remain positive. It’s such a complex illness and completely misunderstood. There isn’t a quick fix. Some people get better and some people never do.”

Avril's blog: www.apalershadeofbeauty.com

What is Lyme disease?

Lyme disease is caused by the bacterium Borrelia burgdorferi which is spread by the bite of a tick. These spider-like insects are about the size of a poppy seed, and can be found close to the ground, especially in moist, shaded areas.

How is the disease treated?

Lyme disease can be treated after a tick bite is found using antibiotics, but treatment can be more complex.

What are the symptoms?

The most common first symptom of Lyme disease is a rash that can appear three to 30 days after the tick bite. Other symptoms can include fever, chills, headaches, stiff neck, fatigue, muscle aches and joint pain.

How can you prevent Lyme disease?

The Health Protection Surveillance Centre lists a number of guidelines, such as using an insect repellent containing DEET, wearing long trousers while walking in forested/grassy areas, and wearing shoes rather than sandals.

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