Friday 30 September 2016

All Ireland winner who contracted Lyme Disease: 'A woman in the waiting room thought I was going to die'

Grace Weston was a typical sociable student, until she began showing symptoms of fatigue and extreme pain. After a decade-long struggle, she was finally diagnosed with Lyme disease. She tells Geraldine Gittens of her battle to get well

Geraldine Gittens

Published 09/05/2016 | 02:30

Grace Weston says its a miracle she is here. Photo: Frank Mc Grath
Grace Weston says its a miracle she is here. Photo: Frank Mc Grath

As a teenager, Grace Weston was a promising athlete. She won an All-Ireland medal with the senior Laois ladies team when she was 16. In college, a bright student of marketing at Carlow IT - the world was at her feet.

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But shortly after routine surgery to fix shin splints in her legs, Grace began to feel unwell, and everything changed.

A long litany of symptoms gradually appeared. In fact, over the next decade, she would battle 68 symptoms including extreme fatigue, shortness of breath, fluid retention, memory loss, facial paralysis, extreme pain, and serious weight loss. She would visit countless doctors and hospitals, and receive differing diagnoses, but nothing definitive, and no cure.

Socialising and shopping became extremely difficult, invariably cut short because she was overcome with fatigue and breathlessness. Grace (31) now looks back on her 20s as a lost period in her life. Finally last year, after a decade of investigating tests on her kidneys, liver, ovaries, lungs, heart and thyroid, Grace was diagnosed with chronic Lyme disease by a German clinic specialising in that particular condition.

Lyme disease is a bacterial infection that is spread to humans by infected ticks - small, spider-shaped creatures that feed on human blood.

"I don't remember having being bitten; there are lots of people that don't remember. I didn't get the tell-tale rash that is often an indicator. All I know is that everything changed dramatically for me when I had an operation for shin splints.

"I suffered from shortness of breath, which got worse as time went by. I got to the point where walking a very short distance would leave me so exhausted and out of breath, I felt like an old person."

One doctor left Grace heartbroken when she recommended that she see a psychologist because numerous tests had produced no answers.

"I remember that doctor saying: 'Grace, I saw you before, I thought there was nothing wrong with you then, I think you are looking for an excuse not to play football and you want an excuse not to work'. I will never forget those words.

"I went from being an extremely fit athletic person, to being so weak that I was wheeled back to the ward in a wheelchair after completing a stress test. Still I was told that it was all in my head. I had to see two psychologists before I could be discharged from hospital.

"Another doctor diagnosed me with kidney disease explaining that I had the same thing that Jonah Lomu had. I also got diagnosed with hepatitis C. I was told that I was going into liver failure and I was going to have a horrible death. But three weeks later, I discovered that I'd been given the wrong results."

Another doctor diagnosed Reverse T3, a thyroid issue. Another doctor suspected ovarian cancer.

"I was put in touch with an osteopath in Australia and after discussing my symptoms, she told me that she thought I had chronic Lyme disease and to research it.

"At this stage, I couldn't sleep. The days and nights all melted into one. I was in pain most of the time and I was completely exhausted, my hair was falling out, my body seemed to be under pressure all of the time."

On Grace's request, one of her Irish doctors agreed to test her for the disease. At the same time she also sent her blood samples to a German clinic. While the Irish test returned negative, the German one showed up positive for chronic Lyme disease. Further blood tests in Germany showed that Grace also had a number of co-infections.

"After a couple of consultations with a doctor in the German clinic, they put me on a treatment plan, starting with oral antibiotics, and herbs, then adding IV antibiotics a couple of weeks later. A PICC line was inserted for the IV antibiotics and I had to undergo all this treatment at home so my parents became nurses overnight.

"I know that if I didn't start the treatment when I did, it would have been a very different story for me; just before I started my treatment my legs had gone dead and my parents had to carry me from bed to the couch. "I started the treatment in June 2014. In a few weeks I noticed a difference. I had a better quality of life until the Herx reactions (the detox) started to kick in."

At its most intense, Grace's treatment took the form of 26 tablets a day, and intravenous antibiotics every second day.

"The treatment was so intense, I was in extreme pain. When the Herx reactions started, I didn't know if the treatment was killing me or curing me. I was in bed most of the time, I couldn't eat anything. I needed someone with me most of the time.

"In September, my bloods were retested in Germany to see how I was responding to the treatment, but actually my infection indicators deteriorated. The doctors told me to remain on the treatment plan until my next visit as they weren't expecting much improvement for months."

By the end of December, Grace was told to take a month's break from her treatment because her blood count had dropped too low.

"At the end of November last year I was extremely ill, my mother was given the name of a healer.

"I remember shuffling into him on the first night, I was wrapped up in layers of clothes, as the coldness was unbearable. I wasn't able to talk to anyone and the voices in the waiting room were piercing through my head. One woman in the waiting room thought I was going to die.

"I have been attending him a couple of times a week over the last year. After a number of weeks, I could see myself improving; the pain was starting to ease."

Now that she's on the mend one year later, Grace is ready to highlight her debilitating illness.

"Recently I togged out for my club team again which was amazing. There's no way I could have done that without the healer.

"If telling my story could prevent someone from going down the long road of battling with doctors, and the huge expense I have endured, then all of this will be worth it."

Some 73 symptoms are associated with Lyme disease, which makes diagnosis difficult. Grace estimates that she had 68 of these symptoms. Tick Talk, a support group for those affected by Lyme disease, says diagnosis is difficult because patients often don't remember being bitten. But awareness is growing in the Irish medical community.

"Awareness in the medical profession has improved over the years and doctors are picking up cases, mainly due to awareness by the public at large. But it is very slow and many are still falling through the net, mainly due to not knowing they were bitten," a Tick Talk spokesperson says.

"Over 50pc never get the classic bulls eye rash associated with Lyme disease," the spokesperson adds.

Grace says: "Up-to-date testing is needed, and if only doctors here would accept the fact that Lyme disease is a serious condition and long-term antibiotics are required depending on the case. But also there is other help. For me, it's a miracle that I'm here.

"The fact that I'm getting better shows there's hope out there. I'm so grateful to my employers Volkswagen Group Ireland for their continued support and understanding.

"I'd also like to thank my family and Mark, my boyfriend at the time, for their help, support and encouragement - words can't describe what they have done for me and I will be forever grateful."

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, which usually lasts for up to three weeks.

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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