In August 2019, I became very unwell with what felt like flu. I was bedbound for ten days and then suffered from a continuous sore throat for a further two months. My GP referred me to an ENT consultant for further investigations.
This later developed into a thyroid storm, where my thyroid became extremely overactive and I was very unwell for some time. I was told I was at risk of having a heart attack and was prescribed beta blockers to control my heart rate. I lost over a stone in weight in less than four weeks!
Severe fatigue and unexplained symptoms
My thyroid issues eventually settled. However, in November 2022, I began to suffer from crippling fatigue alongside a myriad of other unexplained symptoms. In February 2023, I then experienced a severe bout of food poisoning, which I struggled greatly to recover from.
By March 2023, I was regularly bedbound, sometimes for weeks at a time. My husband had to physically help me get to the bathroom and assist me with washing.
Managing a business with chronic illness
I sought support from a local acupuncturist and herbalist, and these treatments helped me reach a point where I could work part-time again, although this was incredibly challenging. My acupuncturist recommended a retired GP who specialises in chronic fatigue syndrome, so we purchased her book. By this point, I struggled to read or concentrate, so my husband would read small sections to me at night. Even then, it was difficult for me to take in information for any length of time.
I began following a paleo keto diet, which also seemed to help. Through my own research, I learned about pacing and began to recognise the warning signs that I was about to crash. These were typically tinnitus and lower back pain, which allowed me to rest and sometimes prevent a full crash.
At the time, we were running a busy kitchen and bathroom design studio, with multiple projects ongoing. Tasks that would previously have taken me minutes now took hours, and I had to repeatedly check my work for mistakes. Prior to my illness, I regularly worked over 50 hours a week. Our two showrooms were located on a busy high street, and there were times when I had to lock the door and lie on the showroom floor because I couldn’t sit upright. Sometimes I would go to my car and lie down in the back until I felt well enough to continue.
I hid my illness from colleagues, often making excuses when I couldn’t do things. I didn’t want staff to worry about their roles or to doubt my capabilities.
Beyond the fatigue: more extreme symptoms
Alongside the fatigue, I developed tinnitus, vision issues including blurry vision (as though I had Vaseline in my eyes), and poor night vision. I experienced electrical sensations in my arms and legs, lost strength and dexterity, and struggled to open jars or tins. I had open sores above my ankles that would not heal. During crashes, I became extremely sensitive to light and sound — even my husband whispering was unbearable.
My eyes became dull and hooded, and I experienced widespread pain, which felt like a build-up of lactic acid in my joints and muscles. My blood pressure became high, and I suffered from palpitations, tremors in my hands, pins and needles, and loss of sensation in my limbs. I became confused and disorientated; when I was well enough to go out, I would sometimes drive to the wrong destination or sit at roundabouts unable to remember right of way.
My memory deteriorated significantly. I could speak to a client on the phone and then have no recollection of the conversation. At times, I struggled to speak at all – I knew what I wanted to say, but I couldn’t physically get the words out. I developed tiny red spots on my arms, which I later learned can be a symptom of babesia, a Lyme co-infection that behaves similarly to malaria.
During crashes, my body would swell; my wedding ring became immovable, and my face became puffy. I lost all resilience to physical, emotional, or cognitive stress. During flare-ups, I couldn’t walk my dogs and would need to rest after just ten minutes of walking.
Eventually, I averaged around one day a week completely in bed. While this was an improvement, I knew I couldn’t continue living like this.
I found it difficult to explain my symptoms to friends. People were sympathetic, but this type of fatigue is impossible to understand unless you’ve experienced it. It is nothing like normal tiredness. I became very good at masking my symptoms socially, which I now see is common with chronic illness.
Navigating a Long Covid and CFS diagnosis
My GP told me I was suffering from Long Covid, but local clinics had shut down and no support was available. A private GP focused on the menopause as a possible cause, which was later ruled out through testing.
I explored many alternative therapies, including the Perrin Technique and kinesiology. These helped temporarily, but my symptoms always returned. My condition worsened in colder months, with some relief during the summer.
After losing sensation in my fingers, I was referred to a neurologist who diagnosed me with chronic fatigue syndrome/ME. At the end of the consultation, he asked about my psychiatric history and suggested further GP support.
My GP focused primarily on my high blood pressure and did not connect my symptoms together.
Finding answers: Lyme disease finally diagnosed
Lyme disease had been mentioned early in the chronic fatigue book we had purchased, and my kinesiologist also raised it. This led me to seek a private consultation with a Lyme disease specialist in Dublin in February 2025. At his request, I had testing through a laboratory in Germany, which came back negative. Despite this, the specialist felt it was important to see me and diagnosed chronic Lyme disease based on my symptoms, explaining that testing is not always conclusive.
While reviewing my history, I recalled finding a tick at home in August 2019 and remembered sending a photo of it to a friend to confirm what it was. The specialist explained that the flu-like illness I experienced that August was likely the initial Lyme infection. I had no recollection of a bite or rash, and he highlighted that it is uncommon to catch flu in the summer months. He also suggested that the infection may have triggered my thyroid storm, as this can occur when bacteria or viruses attack the thyroid.
Treatment and the road toward better health
I cried with relief after this consultation – finally having a diagnosis and an explanation for my symptoms was overwhelming.
We made the difficult decision to close our business of 20 years to minimise stress and support my recovery. I was apprehensive, as working for myself had allowed flexibility around my symptoms.
I have just completed 11 months of triple antibiotic treatment, which was challenging due to side effects. I’ve been told to expect up to 18 months for my microbiome to fully recover.
I do feel the treatment has been successful. My husband often reminds me to compare how I am now to the same time last year, and the improvement is clear.
I am slowly reintroducing exercise. Before Lyme disease, I attended yoga or Pilates classes twice a week and walked my dogs for hours. I can now manage around 30 minutes of gentle yoga, which feels like a huge achievement, and I am strong enough to walk my dogs independently again.
A future beyond Lyme disease
I am currently out of work and will explore future opportunities when I feel well enough.
My consultant has advised that full recovery may take a further two to three years. I will continue medication alongside herbal therapy for the next two years to support healing. He also reassured us that adapting lifestyle and reducing stress plays a crucial role in recovery.
I will be forever grateful to my husband. At the beginning, he felt helpless watching my body shut down. Using practical tools from the chronic fatigue book helped us navigate this difficult time together.
I want to highlight that I had no recollection of a bite or rash, and I would encourage anyone diagnosed with chronic fatigue syndrome to explore the possibility of underlying Lyme disease.
I wish all Lyme disease patients, and anyone living with chronic illness, the very best on their path to diagnosis and recovery. As the chronic fatigue GP I follow says: “Don’t ever give up.”
(C) Lyme Borreliosis Foundation
