“Everything Changed”
The saying ‘your health is your wealth’ really is so true and something you don’t really think too much about until the day it is taken away from you. In 2019 I was in my early 30’s. I was working full time in a great job. I had a great social life, I travelled as much as I could, I loved the outdoors and I was planning my life ahead with my long term partner. Little did I know that a tick bite was about to change everything.
On May 10th 2019 I woke early in the morning with a very strong burning sensation on my right ankle. I was not fully awake and remember rubbing my right ankle with my left leg but the sensation did not subside. Eventually I got up and when I pulled the duvet off I saw a bright red ring around my ankle. I was quite startled as I not seen anything like it before. I was getting ready for work and decided to pop into the pharmacy on the way. To my surprise the girl said it looks like a tick bite and to keep an eye on it and if I feel unwell at all to go see my GP. I was a little surprised/confused by her comment as I had grown up in the country and was aware of what ticks were and had pulled plenty out as a kid, but I was not aware you could become ill from them and to what extent.
The rash on my ankle faded away and I thought no more of it. Roughly two weeks later I began to get very bad aches in my shoulders and a stiff neck along with headaches. I attended my GP and was prescribed anti-inflammatories and painkillers and was advised to see a physio therapist. I attended my GP numerous times after this feeling weak/tired. I had muscle aches, flu symptoms, chills, unable to sleep, anxiety and low energy. One Sunday morning I randomly remembered the pharmacists comment about a possible tick bite. I did a quick google search and up popped the term Lyme Disease which I had never heard of along with a list of symptoms. Muscle aches in the shoulders and neck were top of the list alongside an erythema migrans ‘Bulls eye’ rash. I was a bit shocked as I had never heard of this disease before and was alarmed as I had 3 tell tale signs of early infection. The next morning I rang my GP and couldn’t get an appointment, so I rang the local out of hours GP. When they asked why I was looking to attend I noted that I had a possible tick bite and symptoms linked to Lyme. They rang my local GP and told me to go in asap that morning. This just added to my anxiety and confusion as they seemed concerned, and I had no idea why.
I had bloods drawn for testing and I was prescribed 2 weeks of Doxycycline. That was the start of a very long journey I never expected to be on and a very long road to getting a Lyme Diagnosis here in Ireland.
My first blood results were negative for Lyme Disease and at the time I was disappointed as from all the reading I had done online and all the symptoms I had, I was so sure I had it. Little did I know it can take weeks for antibodies to build up in the blood that’s why many people can test negative in the early stages and this can also be impacted by a weakened immune system.
Over the months/years that followed I started to slowly deteriorate both physically and mentally.
I started showing various unexplainable symptoms of different degrees. I saw a
number of doctors and consultants all over Ireland but one after another never got to the
bottom of any problem, leaving me in complete limbo and struggling everyday. I can’t count how many times I was told I did not have Lyme Disease! I was convinced I had it from all my research online but it was not entertained and was told point blank it is not Lyme over an over again. When I look back now at the gaslighting I experienced during those appointments it makes me sad and angry. The fact I was told by one consultant to go to my GP and get six months of antidepressants absolutely startled me but I later found this has been a common experience for many Lyme patients in Ireland trying to get a diagnose which is shocking.Eventually I had to try accept their feedback and move on as I was getting no where and that was very difficult. I eventually had to reduce down my working hours as I was not well enough to
work full time.One day by chance myself & my mother came across an Irish documentary on Lyme Disease. To say that documentary was eye opening is an understatement. I watched multiple people share their stories and they were identical to mine, it was surreal. It also highlighted how severe Lyme Disease can be which was really scary as I had no idea at that time. That was the first time I had heard about Irish people getting tested abroad due to the unreliable testing here in Ireland. After this I also learned about TickTalk Ireland and about a Lyme Literate Doctor in Dublin.
I reached a point where I was just getting worse and spending more and more time in bed not able to function like I used to. After 2 years of countless appointments I had to pick myself up and start this again which was daunting. I got in touch with a German laboratory to arrange new testing. They sent me a lengthy questionnaire and advised the tests I should do. It was expensive but I knew this was the place that could get me the answers I needed. A few weeks later I received my results – I was positive for Borrelia burgdorferi which is the bacteria transmitted to humans from infected ticks. I also had Epstein Barr Virus and had Chronic Immune Suppression. After I received this report I did a self referral to an Infectious disease consultant in Dublin who specializes in Lyme Disease and in September 2021 I was finally diagnosed with Chronic Lyme Infection 3 weeks before my wedding day.
When I was finally diagnosed with Lyme Disease it was bitter sweet. Now I could finally start treatment, but I had no idea what that entailed or how hard that would be on the body physically and mentally and also the financial implications. In November 2021 I started combined antibiotic therapy which I did for 16months alongside special supplements. I had to travel to Dublin roughly every 3 months for checkups.
Nearly 5 years on I could never have imagined writing my Lyme story on Ticktalk. But I am doing so in the hopes it might help someone else. I am still on my healing journey to this day, but I have learnt so much along the way. I still struggle daily with fatigue, low energy among other symptoms and can no longer drive and struggle walking longer than 15min but I am working with some great people that I hope can get me back to where I want be. Feeling well again with stable energy.
My takeaway from this experience is that with any disease/illness early detection is so crucial and knowledge is power. Like any illness the sooner you can get your diagnosis the sooner you can get treated. Unfortunately in Ireland we seem to be very behind in terms of knowledge and recognition of this disease, which is resulting in many sick people not getting the testing/treatment they need fast enough. I loved walking/hiking prior to being sick but I never took measures to protect myself against ticks, it was not something I ever heard anyone talking about and I had no awareness of any risks. I also had no awareness of the risk of pets bringing ticks into the home either and I had no idea of the signs and symptoms of Lyme Disease. So without any knowledge it’s very hard to protect yourself but I’m hoping that awareness will improve in Ireland and that GPs will be more educated on the subject or at least know where to directed patients if Lyme is suspected. Thanks for reading 🙂