When Life Gives you Lymes

My name is Kate Shanahan, I am 34 years old and a native of Kilflynn Co.Kerry, currently living in Dublin. Sadly, I have been affected by a chronic and life-changing illness known as Lyme Disease, for the past 3 years. 

My illness has deteriorated rapidly over the past year and has resulted in my becoming essentially housebound and bed bound for this period. I find it hard to write about this, as it feels like a bad nightmare. I have been in chronic pain every day for the past 3 years. I have had a migraine every day for 2 of those 3 years. 

Issues I struggle with on a daily basis can include; daily migraine and face pain, widespread muscle, joint and shooting nerve pain, cognitive and memory issues, muscle tremors, severe balance instability, weakness in my legs, vertigo, tinnitus, night sweats, fever, insomnia and exhaustion. I will never be able to fully explain how terrifying and devastating it is to live in constant pain and unwellness. 

I will never get these 3 years of my life back and the effects physically and emotionally have been devastating. One of the hardest things to come to terms with, is that all of it could have been avoided, with a short course of antibiotics, had I received the correct diagnosis and treatment when I first became unwell. Unfortunately, that wasn't the case and it took over 2.5 years to finally receive an accurate diagnosis of Lyme Disease. 

Lyme Disease is an illness caused by a bacteria, Borrelia Burgdorferi, transmitted to humans and animals by a tick bite. 

Lyme Disease has been called ‘the great masquerader’ because it can mimic many other diseases like MS, ALS, Fibromyalgia, Chronic Fatigue and Autoimmune Diseases like Lupus and Rheumatoid Arthritis, among others. Additionally, because available blood tests don't always confirm Lyme or rule it out, arriving at a Diagnosis can be a prolonged and agonising ordeal for the patient. 

Lyme Disease can damage any organ of your body including the brain and nervous system, muscles and joints and the heart. 

Because my infection remained undiagnosed for such a long time, it has now affected many of my organs, particularly my Nervous System. Lyme Disease severely compromises the Immune System and as a result I also developed Pneumonia, Adult Chicken Pox, an Ovarian Tumour and an Inflammatory Bowel Disease. 

I am unable to complete basic day to day chores, like cooking a meal or loading the dishwasher. Going for a short walk even is no longer possible unless I have someone beside me to lean against because of my severe balance instability, dizziness and weakness in my legs. My fiancé Noel needs to be my primary caregiver and sole provider for us now. This has taken a huge toll on Noel’s quality of life and the reality of this overwhelms and saddens me greatly.

Simple things, like playing with my niece and nephews, are also very difficult and I don’t see them half as much as I would like to. It’s difficult to visit my parents in Kerry as I don’t have the energy to make the journey and I miss spending time at home with my family. 

This is just a snapshot of what my life looks like right now. But to fully explain, I need to go back to the beginning. 

In October 2016 my life as I had known it, was forever changed, in what seemed like the blink of an eye. In the weeks preceding I hadn't felt entirely well. I woke up one morning with chest, left shoulder pain and dizziness. I went to lie down and remained in bed for a week with flu-like symptoms.

Nothing could have prepared me for what was to follow. Within a week I developed the most painful and frightening symptoms including widespread shooting nerve pain, muscle spasms, tremors, joint and muscle pain, heart palpitations and numbness. I was admitted to hospital for three weeks on two separate occasions, where the Consultants carried out various investigations. Unfortunately I wasn’t tested or treated for Lyme Disease and was released without a diagnosis or treatment, despite my severe unwellness. 

After 2. 5 years of being very unwell, I was eventually referred to an Infectious Disease Specialist for a second opinion. Unfortunately, there was a 6 month waiting list to attend this Consultant; the only specialist treating Chronic Lyme Disease in Ireland. I decided to travel to a Lyme Disease Specialist in Brussels to avoid this extensive waiting list because I needed immediate treatment. I was required to travel there on two separate occasions at significant financial cost. Following numerous tests, I was diagnosed with late stage Lyme Disease and numerous Lyme Co-Infections. 

Because the disease was left undiagnosed and untreated for so long, my health has deteriorated considerably since I was initially infected 3 years ago. My quality of life has been altered beyond recognition and each day is a mental and physical battle for survival and recovery. 

This disease has taken any chance of a normal life away from me for the past 3 years. As I watch my friends and family advance in their careers, buy their homes, get married, have children, it's like my life has stood still. Because of the progression of my illness, I was forced to give up my permanent job as HR Business Partner with Deloitte, a position I had worked hard towards achieving for several years. I tried to take a step back and work in a contract position with IDA Ireland but unfortunately I wasn’t able to sustain this work either and finished my contract in April 2019. This was the last time I worked.  

When Noel proposed to me last year, it was one of the best moments of my life yet even on that special occasion, I was in extreme physical pain. We have paused our wedding plans because all our savings went towards finding answers and treatment. Most upsetting for Noel and me is currently being unable to start a family, this is heartbreaking for us both. Family is the most important thing in our lives. 

Why do I need to travel abroad to access treatment for my Lyme disease?

I could never have imagined that I would be in the position of developing a life changing illness and needing to start a Fundraising Campaign to access the financial means needed for my treatment. Because I was misdiagnosed for so long we have spent a fortune seeking numerous medical opinions and treatments from Doctors and Consultants over 3 years, to no avail. This has taken a huge toll on both our lives and it has decimated our life savings.

Because I was not given the care I needed in Ireland for my Lyme Disease, even though I have Private Health Insurance, I have been forced to seek alternative care in Poland. It has come to the point where we now need to ask for help. Simply put, I would not survive the progression of this devastating disease without this specialist treatment.

In my experience, GPs and Consultants were far too passive in regards to this disease. It seems they hid behind the questionable Guidelines of the Infectious Disease Society of America (IDSA) leaving me with this chronic illness for 3 years, having paid a fortune to them to no avail. Currently in the US, there is an ongoing Class Action Corruption Lawsuit against the IDSA and seven Insurance Companies for denying patients coverage for Chronic Lyme Disease . 

There is a lack of support, understanding and profound reluctance from the Medical Community in Ireland regarding Lyme Disease, from Testing right through to Treatment.  The refusal of Private Health Insurance Companies to cover treatment costs, on the basis of the IDSA Guidelines, for their own commercial benefit, by overruling legitimate Medical Referrals, is inhumane. My own Consultant, who finally referred me for inpatient treatment of my Lyme Disease, conceded to the commercial will of the Insurance Company, by remaining silent when they declined his Medical Referral and refused to cover the costs of my treatment, going against his medical recommendations. The Insurance Company stated that my treatment was not a medical necessity according to the IDSA Guidelines. 

The urgent Medical Treatments this Campaign will help fund

I require an initial eight week course of treatment in a Lyme and Cancer Centre of Excellence in Poland, followed by a 12 month Home Recovery Programme. I must return to Poland every two to three months as part of the Treatment Programme. 

The initial eight week Treatment Plan involves extensive Immunotherapy, Intravenous Antibiotics and 3 courses of  Supportive Oligonucleotide Therapy (SOT) for Borrelia, Babesia and Bartonella- an Anti-Sense Therapy used to turn off the replication cycles of Lyme Disease and Co-Infections. This therapy has been used successfully to treat Hepatitis C, Cancer and other viruses and infections.

A Final Message of hope…

Without the support of my family and friends over the past 3 years, it would have been impossible for me to have endured and survived. I know I have an uphill battle still ahead of me, but I am determined to regain my health and once again find purpose in my life with my family, friends and community. 

I want to get better and give hope that there is life after Chronic Lyme Disease.

It is humbling to ask for help from my family, friends and community. Words cannot express my gratitude for your generosity and support. It has given me the strength to fight this disease and to undergo the treatment I need to help me recover and regain a healthy quality of life.

Thank you to Noel, my cousins Rosie and Sarah and my friend Jessica for their love and support, and for giving so generously of their time to help me with this Fundraising Campaign. Thank you to my Uncle Jimmy for providing us with a venue at the Oyster on 24th April to launch the Campaign. I look forward to a lovely night with you all. 

Much love 

Kate  


For more information on Lyme disease I recommend visiting the Tick Talk Ireland website. Tick Talk Ireland is a support group which was set up to encourage awareness, prevention and treatment of Lyme disease (Borreliosis) in Ireland. 

http://www.ticktalkireland.org