A Donegal woman with Lyme Disease has taken on a mission to spread awareness of the illness among local doctors.
Emma Doherty from Gleneely has been plagued with the life-changing illness for the past 11 years. The primary school teacher was once an active and energetic woman, but after getting bitten by a tick at a GAA pitch, she has faced over a decade of debilitating disease.
The determined mum of two boys, aged 4 and 2, had to fight for her own diagnosis. Now, she wants to see a changed system where Irish doctors are equipped with the knowledge and the testing facilities to give people the answers they need so their Lyme Disease can be treated.
“I am 35 years old and yet I lost nearly a 1/3 of my life to a disease that, had I known what I know now, could have been prevented,” Emma said.
Doctors did not know what was wrong with Emma, she recalls. The list of possible diagnoses ranged from Fibromyalgia, Rheumatoid Arthritis, Chronic Fatigue, Myalgia, Neuralgia, Chronic Pain, Sciatica, Costochondritis etc. Some doctors told her she was ‘unlucky’ or ‘depressed’.
The lightbulb moment came last summer when a kinesiologist told her there was a virus in her body. Suddenly, she remembered getting bitten at gaelic training and developing a large, growing rash mark.
However, when her GP tested for Lyme, the result was negative.
“Inside my body was on fire, I could hardly walk, lift my hand, my cognitive function was deteriorating. I couldn’t remember things, speaking became more difficult, looking at family/friends and not knowing their names. The pain was terrifying, everyday no let up, it felt like someone was sticking a knife into every bone and muscle in your body, my head felt like it was going to burst. Lyme causes inflammation in your brain. Then when that settled sciatica would start. How could this test be negative?”
Emma did not stop there. She sourced a lab in Germany and organised to get her bloods taken and shipped over for testing. The results found Lyme Disease and several co-infections.
“I was delighted to have finally a diagnosis and distraught as what to do next. Then the realisation hit that I had Lyme disease in my body for the past 11 years. I was terrified. I returned to my GP and handed over the results and was basically told that they could do nothing and that the results were not recognised in Ireland.”
Emma went private to get treatment at the infectious diseases unit in the Mater Hospital Dublin. Finally, she is beginning to feel like herself again with a course of 4 different types of antibiotics every day and a range of supplements to boost her immune system. Emma also attends Biomagnetic pair therapy and it is hoped her treatment will be finished in three months’ time.
“Right now I feel 75/80% back to myself. I feel ‘normal’. I never thought that would happen again. I’m looking forward to the future,” she said.
Emma had to take sick leave from her work at Scoil Íosagáin Buncrana after a difficult Christmas. “I hit a wall in January, my weight was down to 9 stone, my levels of fatigue were x100 and I felt like the life was sucked out of me.”
Emma is calling on every person to be aware of ticks outdoors and of the symptoms of the disease, particularly those in the medical world.
“Our own health system is not aware. I presented to the doctors with the classic bullseye rash ( 50% of people infected with Lyme disease don’t get this rash) and yet I was only given a week of antibiotics and antihistamine. Now because I know, I should have got 6 weeks of antibiotics.
“When do people ever question a doctor and their diagnosis? If you are diagnosed with a condition and are being treated for it, should you not expect your symptoms to improve or in the very least stay the same? What if doctors have got it wrong?” Emma said.
Tick Tock Ireland are hosting the 2018 National Lyme Disease Conference in the Astra Hall, UCD on Saturday 2nd June 2018. Emma is calling on GPs from Donegal practices to attend the event and bring about change.
“Our GPs are the first people that you will run to if you feel that you or your children may have this horrible disease. If GPs know what symptoms to look for people will get treated quicker and get better,” Emma said.
For more information about Lyme Disease, visit the support group www.ticktalkireland.org
Note the poster below from www.ticktalkireland.org on Lyme Disease prevention and detection.