This is the most difficult post I have ever done but in light of my recent Lyme diagnosis, I’ve decided to share the following in the hope that, apart from creating awareness about Lyme disease, it might help others who may be going through what I went through for years.
Lyme disease can be very difficult to diagnose. The debilitating pain and fatigue can be misdiagnosed as Chronic Fatigue Syndrome or depression. Pinpointing this type of infection is not an exact science and the symptoms are not always crystal clear. In my case it took all of 45 years to get a diagnosis.
I’ve been plagued with health problems all my life, starting from childhood. Chronic fatigue, painful feet and stabbing calf spasms most nights, mood and sleep disorders, gastrointestinal issues, night sweats, recurring lower back pain, neurological symptoms, persistent and painful UTIs …These have all been part and parcel of my life for as long as I can remember. The symptoms come and go and can last for days, months or years at a time but chronic fatigue is there all the time as well as a few others.
In my lifetime I’ve been clinically diagnosed with chronic fatigue, ME, PVS, narcolepsy, chronic depression and more. I have endured a myriad of seemingly unconnected symptoms coming from all parts of my body. I have spent a fortune on doctors, consultants, psychiatrists, sleep disorder specialists. I have been on antidepressants and sleeping tablets on and off during my life. I have needed medication to enable me to sleep at night and medication to keep me awake during the day.
At some point about 20 years ago I accepted that there was something wrong with me that medical tests could not define . Conventional medicine provided no answers . In my quest to get answers, alongside conventional treatment I also sought additional help from alternative/ complementary practitioners……..acupuncture, homeopathy, reflexology, naturopathy, Chinese medicine….. the list is endless. But despite my myriad of symptoms, none of these holistic practitioners were ever able to join up the dots and give me any answers either . With the exception of one therapist that I attended for a year and a half after my second son, Eoghan, was born in 1996, they were indeed of little, if any, help to me. However, I was so desperate for help, and even the knowledge that I had someone to go to was a great comfort to me as I struggled to find some light in the darkness.
The years between 2011 and 2019 were the longest stretch of relatively good health that I have ever enjoyed. I had chronic fatigue and other symptoms on and off, but overall it was pretty good. It was during this time I developed my passion for photography. At the shoreline I discovered the pure joy of living in the moment. Standing at the shoreline, aware of the ever changing light in the sky, the winds, the ebb and flow of the moving tide and absorbed in their wonder, beauty and majesty. I cannot adequately describe how much joy my photography has brought into my life. I feel so happy too when the viewer too connects with my images and feels it in their soul.
This year, I have experienced ill health again. I have been bed-ridden much of the time with chronic back pain. My problems started in October 2019 with severe pain in my right foot. By the end of January this had worsened and I was now in considerable pain with my lower back and very stiff. I went for 5 or 6 sessions of physiotherapy, but this had no benefits. My GP then referred me for scans which showed up nothing abnormal. So I was then referred to a Spinal Consultant to try to get to the root of the problem. I was sent to Cappagh Hospital for a spinal injection to ease the pain. This had no effect. The consultant then recommended more physiotherapy. I felt I was going around in circles and it was very frustrating.
In October 2020, however, I became much worse. I now had very painful arthritis in my wrists, and was unable to perform the simplest of tasks around the house or lift anything. My hips were also very painful so I was unable to sleep at night. I went back to my GP practice in Drogheda. This time I was seen by a different doctor, who was recently qualified and working in a temporary capacity with the surgery as part of his rotation training. He did a huge range of blood tests and I was tested for everything under the sun. On my second consultation with him to discuss the results he was perplexed that the blood tests were all fine. It was clear though that I was in a lot of pain as I was on prescribed painkillers and anti-inflammatories every 4 hours. He decided to refer me to a Rheumatologist as I was displaying symptoms of rheumatoid arthritis. I knew myself he did not think this is where the problem lay, but he had exhausted all avenues as blood tests were fine.
His previous examination had detected nerve damage to my feet I was unable to sense/feel the vibration being applied from the tuning fork on my feet. He queried if I had been bitten on my foot. I thought about it and then recalled that, yes, that I had gotten a small bite on my foot in October 2019 on a photographic trip to Italy. At the time I thought it was insignificant, apart from the fact that it was a little itchy. He suggested to me that I might have Lyme disease. Blood tests were arranged for testing up in UCD.
That day marked a turning point in my life in so many ways and I will always be grateful to that GP for shedding light on the darkness that was part of my life. I went home from the surgery and started studying up about Lyme. As I educated myself about Lyme disease, I came to realise that I have lived with this disease all my life. Suddenly, my life came full circle, all my struggles, bad health, strange and debilitating symptoms. I was now able to join up the dots myself and make sense of it all. This demon that had a grip on me and kept coming back time and time again to unleash more misery, it was Lyme Disease.
I can trace back to when the problems with my health first started. As a child of 8 or 9 years old I remember getting bitten by ticks in the haybarn of my grandparents’ farm down in west Clare. I remember picking them out of my arms. For years after that I suffered with recurring UTIs, chills and chronic fatigue and a range of other unpleasant symptoms.
After my surgery visit , I joined an online support group TickTalk Ireland and this a huge support as well as a wealth of information. They advised me to get blood tests done privately in Germany, as the blood testing done in Ireland for tick borne diseases was not completely accurate. As expected, the results from UCD were negative so I sent blood samples to Armin labs in Germany which are more sensitive than the tests done in Ireland. No test is always accurate, so a clinical diagnosis by a Lyme literate doctor is necessary. A Lyme literate doctor will diagnose someone with Lyme if their symptoms match it and cannot be explained by anything else. There is only one Lyme literate ID Consultant in the country, Dr Jack Lambert of the Mater Hospital in Dublin.
The results came back from Armin Laboratories. As expected, I tested positive for Lyme disease, Borrelia Burgdorferi. More than one infection can be spread by a tick at the same time ( called coinfections ). In addition to the Lyme I tested positive for about a dozen different co-infections. The most well-known coinfections are Bartonella and Babesia. One reason Lyme disease presents in so many ways is that some of the symptoms are not from the Lyme itself but from these other coinfections that emerge when the immune system malfunctions.
In my case it’s not clear if the bite I got in October 2019 ignited old infections that lay dormant for years, or if this bite introduced new infections into my system. Many of the symptoms I had this year were new to me. They completely floored me. I had never experienced joint, muscular and nerve pain like it before, arthritis or the chronic stiffness.
A Lyme diagnosis is not good news. But for me it has given me an understanding of why my life has been the way it was. Finally after 45 years I know what my demons are. Armed with this knowledge, I am able to fight them.
Some key components to recovery include an anti-inflammatory, allergen-free diet, adequate rest and avoiding stress. Stress causes painful flare ups in an already overburdened body. Treating Lyme requires a global approach that not only kills the Lyme and co infections but also strengthens the gut and immune system so that the infection can be kept at bay. Removing sugar, dairy and gluten from my diet has had a remarkably positive effect on my wellbeing. The pain subsided enormously, as did the stiffness.
The past year has taken a huge toll on my body and I feel battered and bruised. My immune system has been severely compromised. Nerve damage to my feet is causing issues with pain. I have arthritis in places. I don’t have a huge pile of energy, so I need to preserve what I have just to get through the day, and get out for walks a few times a week. In addition to conventional medicine there are dietary and herbal approaches to this disease too and for me, my recovery will involve both conventional medicine prescribed by my ID consultant and support from Lyme Literate therapists / practitioners.
I am aware that this will all take time, but I do hope that by this time next year I will be enjoying good health. I am sharing all this because I want to create awareness about Lyme disease. The HSE website states that Lyme disease is not a common infection and that there are 50-100 cases annually. Taking into account so many cases go undetected or undiagnosed, Dr Lambert at the Dublin Infectious Disease Clinic estimates there are actually 2000 cases across Ireland annually.
It’s a difficult disease to diagnose, and I have learnt from my own experience and that of others I have spoken to, people are often referred to Neurologists, Rheumatologists, Psychiatrists, Sleep Disorder Specialists, Physiotherapists…etc. More education is badly needed and in general, there does not seem to be really any awareness in the medical community. People, like myself, have been shouting into the void for years and years before being properly diagnosed and receiving appropriate help.
I have Lyme disease and those of you who know me are also aware that I am completely deaf. Unfortunately this too has been caused by the Lyme disease . Most of my medical issues have been neurological . As a child my hearing deteriorated hugely and immediately after I was bitten in summer 1975. I had cochlear implant surgery in 2016 which enables me to hear fairly well. I have never allowed my deafness and health problems to define me. First and foremost I am a Landscape & Seascape photographer. Photography is the air that I breathe. It has carried me through dark and difficult times. . I do believe that the joy I got from creating images over the past 10 years has helped me enormously and has given me the strength to develop and blossom as a photographer. The bite I got in Italy in October 2019 has reignited dormant infections and perhaps introduced more. However, it has been a blessing in disguise as finally I have answers. For the moment, I need to rest plenty and avoid stress to give the medication the very best chance to succeed. This is not a death knell for my photography. Rather, it’s a new beginning. I have faced my demons and now know what I am dealing with. I will continue to capture the beauty all around me & I look forward to spending more and more time at the shoreline in the coming weeks and months. The shoreline is where I belong. It’s where I feel happiest. It brings out the best in me and I hope that is reflected in my images.
Thanks to Tick Talk Ireland for all their online assistance and friendship. They have been a mine of information and a great source of comfort as I try to navigate through all this.
Thanks to my consultant, Dr Jack Lambert, Dublin Infectious Disease Clinic, Mater Hospital, my GP, Dr Tony Crosby ( Dublin ), and Herbalist Ciara O Meara for their ongoing help and support .
Last, but not least, thanks to my family and friends for their enduring love and support both now & throughout my life.
Main image : Me as a child at my grandparents’ home in west Clare .