By Claire Corrigan
Imagine suffering from a serious ailment, debilitated and hardly able to function for four years, but without anyone offering you a proper diagnosis? That’s what a brave Mullin-gar teenager has been faced with, before finally discovering for herself what her health problem was, and how she can overcome it in a specialist German clinic.
Many of us know about airborne viral or bacterial infections, but bacterial diseases caused by insect bites are much less understood by the general public, and even by doctors. Emma Cleary of Mullingar discovered this the hard way.
Lyme Disease is an illness caused by the bite of an infected tick, with debilitating flu-like symptoms, including headache, fever and joint pains. If not diagnosed and left untreated with antibiotics, a range of other serious symptoms occur, similar to those experienced in Chronic Fatigue Syndrome, Fibro-myalgia, Arthritis and Multiple Sclerosis.
That many of the symptoms of undiagnosed and untreated Lyme disease are so similar to these chronic conditions means it is often not considered at all in assessing a patient, according to Dr. John Lambert, a specialist in infectious diseases at the Mater Hospital, Dublin.
Now 17 years old, Emma Cleary was an outgoing, sporty young girl who enjoyed playing football and being around nature, until hit by the disease over five years ago. “I was about 12, and had just started secondary school. It started with really bad fatigue, muscle pains and a lot of dizziness. I would literally fall asleep on the floor doing my homework. I just thought it was the earlier mornings or the extra workload,” she told us.
However it wasn’t long before Emma’s condition rapidly deteriorated and she was admitted to hospital. “I literally couldn’t keep anything down,” she told Topic.
Emma’s devoted mother Amanda said the girl suffered from severe fatigue for six months, waking with cramps in her legs as well as pains in her neck, arms and shoulders at night.
UNWELL AT SCHOOL
In March 2014, Amanda received a call from Emma’s school, Loreto College, Mullingar, to say she was very unwell.
“I brought her to the doctor and he thought she had glandular fever, and she’s literally been sick ever since with constant throat infections.”
Emma tried her best to continue playing sports, pushing herself to train four or five nights a week. “During the training sessions, however, I felt like I could faint and would have to sit down. It just got to the stage that I couldn’t play anymore.”
During the summer holidays, Emma was unable to get out of bed. “I thought she was just a teenager being lazy, but she started complaining of a pain in her side and stomach,” her mother said. Emma was admitted to Mullingar A & E that October, where she was diagnosed with gastritis and given medication. The pain continued, however, and a laparoscopy revealed that the teen had a 6cm ovarian cyst, which was removed. However, 12 months later, Emma was back in the operating theatre to remove another cyst. “She was on a huge amount of pain relief because she was doubled over and the tears were coming down her face,” her mother Amanda recalled.
Over the following months, Emma’s condition worsened to the point that she ended up bed-bound for two years. “I had constant migraines, blurred vision, heart palpations and could not keep food down for up to three months at a time,” Emma said.
She revealed that she also developed Bartonella infection and showed Topic photos of the angry red marks that covered her legs. “It’s literally blood vessels that are so swollen inside from the bacteria. The blood vessels are trying to come through the skin. It’s a co-infection of Lyme Disease,” Amanda explained.
“Every time I had a shower, the warm water would burn my skin, because it is so sensitive; it was like having a kettle of boiling water thrown over me,” added Emma.
FOUR YEARS WITHOUT DIAGNOSIS
As well as chronic fatigue and extreme muscle pain, Emma endured countless kidney and throat infections, accompanied by painful bodily inflammation. “She also gets blurred vision, brain fog and hot and cold sweats; just everything you could think of,” her mother said, and she endures constant blockages of the bowel and must rely on laxatives. “When they don’t work, she has to go in and out of hospital to get it cleared,” Amanda said.
Emma said widespread inflammation has caused her body to slow down. “It is not working the way it should and my metabolism is so slow that even if I’m eating nothing, I’m putting on weight.”
For four years, the symptoms continued without any diagnosis, with Emma even being referred to a psychologist at one point. “I was nearly getting to the stage where I was doubting myself, though I knew there was something very wrong.”
Around this time, Emma saw a story online about a girl who had contracted Lyme Disease in 2016 and she was stunned by the similarities between their symptoms. “It was like reading a story about myself. I started researching it and was referred to an infectious disease doctor in the Mater Hospital.”
With renewed hope, Emma had blood tests completed at a cost of €400. However, the results returned ‘inconclusive’. “The doctor said to me, ‘You are a very sick girl, but I can’t tell you why.’
Undeterred, Emma attended a Lyme Disease Awareness Day in Athlone, where she underwent more blood tests, which were sent to a lab in Germany. “They cost €500 but that €500 gave us our answers,” her mother explained.
Emma tested positive for Lyme Disease as well as four co-infections. “I have Epstein Barr virus, Bartonella and various others. It was just a relief. I had been given all this stuff that wasn’t working, because it was the wrong medication, so now we could look at other treatments.”
They returned to the Mater Hospital in February, 2017, and the teenager was put on an 11 months course of oral antibiotics and her condition improved. “Before, Mam would have had to bring me to the toilet and wash my hair in the shower. Having my independence taken away at such a young age is awful.”
“She couldn’t stand in the shower, so she needed a chair,” her mother added, “And she hadn’t even the strength to dry herself afterwards. Compared to that, the antibiotics did help her a good bit, but they won’t do anymore.”
Emma explained that because it was four years before she received a diagnosis, the disease has reached an advanced stage. “There’s only so much the antibiotics can do, which leads us on to the special treatment in Germany that we are hoping to get.”
After much research, Emma and her mother came across St. George’s Lyme and Cancer Clinic in Germany. “They do a treatment called whole body hypothermia, where you are put into a sedated state and they raise the body temperature to over 42 degrees for six hours, which kills off the Lyme bacteria in the body – it is very intense and you will be very sick afterwards,” Emma told Topic.
“For two weeks, you have IV infusions of antibiotics with different supplements and vitamins. You have a two-week stay at the clinic and they do lots of different therapies, from colon detoxing to blood cleansing,” her mother said.
INCREDIBLE RESULTS
Emma and her mother revealed that they have spoken with a Kildare lady who has had incredible results with the treatment. “She’s gone from taking 20 painkillers a day to none. She went over to Germany in a wheelchair and came back with a walking stick. She was bed-bound for two or three years and did her Christmas shopping last year in a wheelchair; this year she was able to do it with her walking stick,” Amanda said.
“It’s gives me a lot of hope because I am young,” Emma enthused. “After the treatment, your immune system is able to build itself back up and fight viral infections and the co-infections of the Lyme Disease.”
Amanda said the treatment involved a whole-body approach, including strengthening the immune system, detoxification, nutrition, and overall health. “Once the Lyme is killed off, the rest will heal itself with the help of a good diet and supplements.”
Over the years, Emma has missed out on all the things that most teenagers take for granted, such as attending school and spending time with her friends. “Last year, I took a complete year out to heal on the antibiotics. I’m supposed to be doing my Leaving Cert but I repeated fifth year, At the moment, my health is a priority.”
After years of caring for their daughter, Emma’s parents cannot afford the €20,000 treatment and are appealing to the public for help. “It has been costing us €400 a month between medication, physio and acupuncture sessions. We’ve also been to herbalists and homeopaths, so we have nothing left.”
FUNDRAISERS
Now there’s a number fundraisers over the coming months in order to raise the money for the teenager. “On Thursday, 16 February, there’s a country music night in Feerick’s in Rathowen, featuring Camillus Egerton, and tickets will be available at Cleary Electrical (run by an uncle of Emma’s) and Irishtown. Just buying a ticket will be of benefit to me,” Emma said.
“Brendan Cocoman organised the whole thing and has been amazing. He did the posters and printed all the tickets,” her mother added.
A Pub Quiz will also take place in The Chambers Bar on Mount Street on March 2nd, with more quizzes to be announced.
“People have been so good. The goFund page has only been up nine days and already has raised €2,700,” Emma revealed when she spoke to Topic earlier this month. “I also have a fundraising Credit Union account for people who don’t use the internet, which is 58084.”
Amanda added that there are fundraising boxes at the counters of a number of shops, including in Cleary Electrical, for donations.
Emma hopes that by sharing her story, she can help someone else who may be suffering without getting help.
“I hope my story can help someone else out there, who hasn’t been diagnosed. I never remember getting a bulls-eye rash and neither did many other people. I never thought an insect bite could make me so ill.”
She also praised her mother for her unwavering support over the last four years. “I’ve had almost 20 admissions into hospital and Mam would be with me in A & E, getting no sleep and having to work all day. I’d be lost without her. She always stuck by me.”
Amanda said that despite her poor health, Emma has a fantastic outlook and plans to study Psychology at college some day.”
Emma thanks all her friends, as well as school Principal, Ms. Marése Bell, for all her support. “They are absolutely amazing and will be doing a fundraiser. You do learn a lot through being sick. It has been very tough but it has made me realise what is important in life. I went shopping with one of my friends for my birthday in September and I was so appreciative that I was able to do that. Or even getting a full day in school is such an achievement,” said Emma.
