"Every day is a bad day" My invisible battle with Lyme disease

This week researchers in the US announced a new and faster way to test for an active infection with Lyme bacteria which can allow quicker treatment to prevent long-term health problems. Amanda Cassidy speaks to those for whom it is too little, too late. 

Paul Doherty from Co Kerry says he is prepared to do anything to rid himself of Lyme disease. He says he can't believe something an innocuous as a little bite could have such a dramatic impact on every aspect of his life. "I felt a little lump on my backside. I squeezed and pulled at it and eventually it came away to reveal what I now know to be a blood-filled tick but at the time looked like something out of the move, Alien! Little did I know through all the squeezing I’d pumped myself full of Lyme Disease filled saliva and my life would never be the same again."

Lyme disease is a bacterial illness transmitted by ticks and spread by infected ticks in deer, sheep, dogs, birds and mice. According to the UK Health Protection Agency, up to 3,000 people contract the illness, also known as borreliosis, each year. Figures in Ireland are reported at between 50 and 100 cases but many go unreported and therefore, untreated. Campaigners say the problem is worsening, as warmer winters and wetter summers allow ticks to spread further afield and many doctors are not aware of how prevalent this disease can be. Not only is it hard to detect and practically impossible to cure unless you receive antibiotics in the first 12 months after being bitten.

When an infected tick bites a human it releases saliva to stop blood clotting. Infected ticks carry bacteria, the spirochaete Borrelia burgdorferi. This causes inflammation in your brain, joints and contributes to the pain and lethargy.

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"Every day is a bad day"

Paul was eventually diagnosed with ME but he felt something else had to be contributing to the debilitating symptoms he was experiencing. He read an article about a woman with similar symptoms who was diagnosed with Lyme disease in the US and finally got his correct diagnosis. He says that living with Lyme disease,  every day is a bad day.  “A common misconception of Lyme is people thinking you go through good and bad periods, you don’t, it’s ALL bad, every second of every day for me is a state of constant joint and muscle pain and a constant downward spiral which has now left me with the inability to walk for more than 10 minutes without severe exhaustion. Any small bit of exertion leaves me debilitated for days. I suffer regular bouts of problems with my heart and get a number of neurological issues which I find hard to explain, these include brain fog and a severe crushing sensation in the brain which can last 30 seconds or more.

Paul now hopes to travel to Germany to receive potentially life-changing treatment that heats his body to almost 42 degrees to try to rid his body of the disease. The three-week programme will also kill good bacteria so Paul will spend the next year monitoring everything he eats to allow the good bacteria in his body to regenerate His partner Helena says that the process is not without risks but they are prepared to take them. “There can be cardiac side effects or cerebral problems and Paul will need to be prepared and monitored constantly while he undergoes the treatment. We both feel it’s worth taking this risk as soon as possible so that Paul stands a chance of getting some quality of life back.

Inadequate and unreliable

Doctors also initially misdiagnosed Emma Doherty from Donegal. They told her that the symptoms she was suffering from were ‘probably depression.’ “Inside my body was on fire, I could hardly walk, lift my hand and my cognitive function was deterioration. The pain was terrifying, every day, with no let-up. She remembered she’d been bitten badly during GAA training which left a large welt and decided to go ahead and test for Lyme Disease.

Emma’s test was negative. Doctors then suggested it could be Chronic Fatigue, Sciatica, Fibromyalgia or even arthritis. In an interview with the Sligo Champion, Emma said she didn’t have much faith in the Irish system when it came to the possibility of Lyme disease. “I knew that the testing in Ireland is totally inadequate and totally unreliable. It misses 70% of patients." So she contacted a specialist lab in Germany and her blood work showed she had Lyme Disease and several co-infections. Now, 10 months on and she is on an intense course of antibiotics and has undergone alternative therapy called biomagnetic pair therapy. She says she is on the road to recovery but that more people need to know about the real dangers of this disease.

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The fight for a diagnosis

Raising awareness about the reality of living with Lyme disease is something both Paul and Emma have been fighting for. In the US, it is celebrities who have managed to shine a light on the disease which often goes undetected, undiagnosed or even disbelieved.

Yolanda Hadid is a former model, reality TV star and momager to catwalk regulars, Bella and Gigi Hadid. She charted her struggle with Lyme Disease during her four seasons on Real Housewives of Beverly Hills. She has always been very open with her struggles and last year wrote a memoir, Believe Me: My Battle with the Invisible Disability of Lyme Disease.

Speaking at the Global Lyme Alliance Fourth Annual Gala in New York City this week, Yolanda spoke emotionally about her struggle with the disease. “What keeps me awake at night is not my own journey with this disease, but, 'the journey of my children and so many children in the world that don't get the proper treatments they deserve.'

'Living in today's world is hard enough... as a healthy child,' Hadid added. 'It's time that we all put an end to this. I got sick in 2000. We’re now in 2018. I had one year of remission. If I die next week, next month, next year — this is the most, the greatest cause I have ever fought for.”

In Ireland, the lack of awareness of Lyme disease and other bacterial infections carried by ticks means most people don’t check themselves. Dr Paul McKeon is a specialist in public health medicine with the Health Protection Surveillance Centre. Speaking to the Irish Times, he says that most of the tick population is rural. “Ramblers, campers and those who work in woodlands or moorlands are at greatest risk. Dogs can carry ticks home which can go on to bite family members, so checking for ticks after a trip to the countryside is very important.”

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Ticks are most common in spring and early summer. The HSE warns that if you notice a “red bullseye style rash” to contact a GP immediately. Lyme disease has flu-like symptoms and if treated immediately with antibiotics will stop the spread of bacteria. If untreated, it can spread to other parts of the body causing neurological side-effects. Other advice from the HSE include 'Wearing long trousers, long-sleeved shirt and shoes; Consider using an insect repellent; After a day out, check skin, hair and warm skinfolds; If you find a tick, remover it, consult a GP if symptoms develop.'

This week researchers in the US announced a new and faster way to test for an active infection with Lyme bacteria which can allow quicker treatment to prevent long-term health problems. But for Paul, it is too little too late.  "I had a brain MRI done in January 2016 which showed a number of lesions and significant changes to previous MRI. This is consistent with late stage Lyme Disease as must sufferers eventually die from heart or brain issues. Such is the state of our health service in Ireland I am still awaiting a follow-up appointment to explain these results after two and a half years."

To you want to contribute to Paul's treatment you can donate here. 

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