In the September|October issue of Irish Country Magazine, Niamh Devereux shines a light on the bacterial infection that can be spread to humans by infected ticks, for our health series The Invisible Struggle. Here, she speaks to Cavan woman Nicola Hutchinson, who shares her traumatic experience with Lyme disease and how she was let down by the Irish health system, in the hopes that she can empower others to trust themselves and seek answers for any health issues they may have
Hi Nicola, thank you so much for trusting us with your story. Can you take us back to the start of your battle with Lyme; how did it all begin for you, and what were your symptoms?
On 8 August 2021, I saw a bite on my ankle. I had been out running in my local forest that morning but had not felt a bite. By 15 August the bite had spread around my ankle. I visited by GP as I was feeling a little tired and was sweating a lot. I was worried that perhaps I had an infection. My GP made a comment that ‘ it could be Lyme disease but probably wasn’t.’ I had never heard of Lyme disease so originally thought nothing further on it.
Your journey for diagnosis was a long and arduous one, like it is for a lot of people suffering from this disease. Can you tell us about it?
From 15 August 2021 onwards, my health deteriorated quite rapidly, as did my cognitive functioning. This made it really difficult to chase a diagnosis or to help myself. I was so fortunate to have a really supportive work environment which meant I had one less thing to worry about. I was prescribed antibiotics on 15 August due to my fatigue and night sweats. On 27 September I was again off work for a week. This time due to what felt like a chest infection and running a fever. At this point I was going to bed at 4 in the evening, as soon as I got home from work. My husband was solely caring for our two little boys in the evening. My joints were so sore. The pain travelled so I could not pinpoint where it was. Sometimes my wrists, then the next moment my ankles, then my arms. I was prescribed more antibiotics.
I knew I was unwell but was sure that I could somehow power through. I was sleeping in until as late as possible in the morning. I was driving to work and as soon as I got home I was climbing into bed, often without eating anything. I would then sleep solid until the next morning. My sleep was non restorative. Which means that when I woke in the morning it would feel like I hadn’t actually slept. I didn’t realise it at the time but my short term memory had deteriorated. It still happens now, that work colleagues, family or friends make reference to something that happened during that time and I have no recollection. There are people who I met at that time who I have no recollection of ever being introduced to. It was like a whole portion of my life happened in which I wasn’t present.
On the morning of 7 October I woke up, and my right leg, the one I had been bitten on was black from the knee down. It was covered in bruises with barely a piece of skin its normal colour. It was frightening and I suppose I either wasn’t thinking clearly or I was in denial. I did not return to the GP until 12 October . At this point I could not walk unaided, I had started to get severe headaches with a loss of vision. I was experiencing bouts of nausea. I could not hold or cuddle my boys. Every time they rubbed against any part of my body it felt like my skin was been burned. My GP sent me home with no explanation as to what it might be. I showed her pictures of what I had learned was a bullseye rash but she felt that it wasn’t Lyme disease. I went home and cried. I was lost, tired and sore.
I received an unexpected follow up call on 14 October from my GP to tell me to present at A&E in Drogheda. This experience was so demoralising, I have some memory of sitting on the floor, waiting to be seen. When I was taken in I was given some medication that made me vomit. Two other patients assisted me as I was unable to move from my chair and there was no medical personnel available to assist. I was given a bed in the infectious disease ward. I was the only female patient in the ward at the time. The consultant who was head of Infectious Diseases met with me. I was filled with a little bit of hope as I thought I was finally going to get my diagnosis. When I asked him if he felt it were possible that I had Lyme disease, he informed me that chronic Lyme disease didn’t exist in Ireland and that it was something made “popular by pop culture”. I was deflated but also felt a little as if I was losing it. I asked myself if perhaps I was imagining it all. I was also seen by an endocrinologist who asked if I was prepared to take an STD test. I said I was but felt it unnecessary as I was married for a number of years. He asked me if I was confident that my husband was faithful. I was alone and vulnerable, I proceeded with the STD testing so that they could mark another thing of their list. I was discharged the next day with a cream to apply to my joints. This endocrinologist followed up on 26 January via a telephone call (three months after I was admitted).
On 27 October, I had pains in my mouth making it difficult to eat, and my whole body was experiencing cramps, I had pains in my kidneys and chills. I continued to call my GP who continued to have no answers. In an attempt to rule other things out, I self referred to Dr Pendleton in Belfast. He has a Rheumatology clinic. When I wasn’t asleep, I was in bed on my computer trying to find people with similar experiences. Lyme disease constantly came back to the forefront but so many medical practitioners had told me that it simply wasn’t the case. I sought an appointment with a rheumatologist to rule out lupus and fibromyalgia. I met with him on 3 November 2021. Dr Pendleton tested joints in my wrists, each of my fingers, my elbows, knees and all my toes. I was informed that he felt there was arthritis in each and every joint. At this point my husband was carrying me from bed to the bathroom at night. I remember when he brought me into the clinic it seemed like I was 20 years younger than the other patients waiting to be seen yet they could all walk unaided. I cried most of the way home. He felt I had reactive arthritis but wasn’t quite sure from what. He suggested taking bloods to check for lupus and treatment by means of intra muscular injections from my own GP. She refused to administer the injections.
My stepmother had spoken with a family member in relation to my health. She had known someone who had Lyme disease and so passed her number to me. I remember calling the number of this wonderful stranger and it felt like I just cried down the phone for the entirety of our conversation. Everything I experienced, she had experienced. She told me about a doctor based in Germany called Dr Armin. She told me her experience and outlined how I might make contact.
I contacted Dr Armin via an email address from his webpage. On 29 November, they sent me a test kit. It arrived on 9 December. I brought this test kit to the nurse in my local practise and the nurse completed the blood draw on 20 December. The laboratories then arranged for a courier to collect my sample from my house. On Christmas Day 2021, I had an email response from Armin labs with all the details of my blood work. Although I was a little unsure, I tried to comprehend the data within the results and it seemed that yes, I had Lyme. It was a truly great Christmas present, if a little tentative. Finally an answer.
Once the Christmas holidays were over, I contacted Dr Jack Lambert who is based in the Mater Private. I had learned online that he was the best in the country. I sent his office my Armin results and I finally met with him on 25 January 2022. He confirmed what my husband and I had suspected. Although I had no energy, was wobbly on my feet and mostly nauseous, we celebrated quietly together. Finally, I had an answer and a possibility that I could hold my boys again without feeling pain.
I started a really strong regime of antibiotics. On alternate days, I was taking 15 tablets per day on average. It caused havoc on my immune system and stomach health. I definitely got worse before I got better but within three weeks, I felt improvements. I finished my initial treatment in September 2022. I’m still medicated and have come to terms with the fact I always will be. I have foolishly tried to wean myself from my final medication but each time I do, the joint pain returns. So, I am no longer stubborn to the fact that my body needs help to function.
That is an incredibly powerful account of your hellish experience. You are a mother of two boys and run a business, Two Sons Floristry; how was your everyday life affected by Lyme disease?
Life with and after Lyme is best described as being ‘a little bit less’. Less date nights, less adventures with friends and less running around and gallivanting with my two gorgeous boys. The fragility of my health is something that scares me so much. I worry if I overdo it at work, at the weekend, or whilst playing with the boys that I might become bed-bound again. When I feel a little niggle of joint pain, or forget to pack something in the boys’ bags for school, I wonder is it because I am getting sick again.
I also feel I’ve missed precious time or memories with them. I’m aware that there are chunks I don’t remember. While going though my emails a couple of months back, I realised that I had emailed myself while I was sick. Emails with dates and information. I don’t remember doing it but some part of me obviously knew it would come in useful. I work in a Post Primary school as an ASD (Autism Spectrum Disorder) co-ordinator. Two Sons Floristry was a passion project whilst on maternity leave and during Covid. Both existed somewhat happily side by side before I was unwell. It seems likely now, at least for the near future that it will be one or the other. It sounds cliché but I hold my health, my family and my friendships much tighter than I did before. There will always be the fear that I might go back into my Lyme-induced bubble while others move on. Spencer, my oldest son who is six, still remembers how unwell I was and if I cough or have a runny nose, he will ask if ‘Mammy is getting sick again’.
How are you feeling these days?
I am feeling hopeful. Sometimes it feels like I’m making no progress but then a month passes and I see a photo of myself, or notes in my work diary or family calendar and I realise how far I have come.
What do you think, having gone through this, are the greatest misconceptions people have about Lyme disease?
That is doesn’t exist, that you will receive the treatment you require within the Irish healthcare system.
Lyme and other tick-borne infections are on the rise, so why do you think so many of us are still not aware of how prevalent and serious they are?
It is a very Irish thing or perhaps generational thing to accept what we are told by people in certain positions of power and to accept it without question. Recently I heard the Taoiseach speak about Lyme disease and its prevalence in Ireland, yet still there are consultants informing patients how it does not exist.
What message do you want to reach people, in the hopes that they don’t have to go through what you did?
Advocate for yourself and notate everything. Check yourself after each and every walk, wear bug spray. No one cares for your health more than you do yourself.
Living with an ‘invisible’ disease is isolating and takes a toll on mental health, too; for anyone currently suffering that is reading this, would you like to offer any words of advice?
I am very fortunate to have great support from my husband and so much love from my children. I am also incredibly fortunate to have the friendship of some very very strong women. I accepted their help along the way. Friends dropped in home-cooked meals, my mother-in-law sat with the boys while I lay upstairs crying unable to get out of bed. My vice principle at work really helped me to focus on how far I had come when I returned to work even when I felt like I was moving at a snails pace, pointing out all that I could now do unaided. I listened to the words of all these people. I did not have the energy to put my ‘best foot forward’ but I was always transparent in relation to how I felt and what part of the journey I was at. Hiding it did not make it any better. As is my personality, I was dogged in my approach to getting my diagnosis. I ruled out things and pushed to the next thing; where possible I did not wait.
For more information on Lyme disease – from ways to prevent it, to spotting the signs – pick up the September|October issue of Irish Country Magazine
