My Lyme Story: Emma Oliver

May is Lyme Disease Awareness month. Here, Emma Oliver, 51, shares her story about her long fight and astonishing recovery from Lyme disease, in a bid to help raise awareness of this devastating disease. 

Photo of Emma Oliver outdoors looking directly at the camera

Lyme disease is caused by Borrelia, a spirochete bacteria. It’s the most common tick-borne infectious disease in the northern hemisphere and there are multiple strains of the bacteria. Lyme disease is endemic in many parts of the United Kingdom, particularly in woodland or heathland areas but disease-carrying ticks can also be found in cities and gardens. 

I was first bitten by a tick in Connecticut, USA, in 1993, years before my body began to break down and led me to suspect Lyme. I had three further tick bites; South Africa, Hampshire and Surrey, but it would be years again, before I was finally able to join the dots and gain diagnosis, for diagnosing Lyme disease can be difficult due to the wide range of symptoms and lack of a reliable blood test.  

Living with Lyme disease was horrendous. No doubt, my two daughters and husband suffered as a consequence.  

Symptoms crept up on me. All sorts took hold and ran amok as my immune system failed. I was always ill. Colds turned to chest infections, which led to pneumonia and shingles. There were endocrine issues, general aches and pains and malaise; digestive issues, repeated miscarriage and mental health problems…  

Initially, day to day tasks became a mammoth challenge. I remember trying to do maths and my brain just couldn’t figure out a simple sum. I ignored it, blaming perimenopause, though I was only just 40. 

More of me failed. Getting out of bed or climbing the stairs could be an unimaginable feat. I suffered not only with MS-like symptoms, stumbling, dropping things, vertigo, but there was a frailty to my body, insomnia robbed my nights. I began to suffer with more acute neuro Lyme symptoms, known as Lyme dementia; talking, writing and reading became a challenge. My success as a feature writer bombed.  

My social life was impacted, and my mental health suffered to the point where even with two small children, and I’m ashamed to say this, I wanted to end my life. I was in so much physical pain; it appeared the only way to free myself of that. A visit to my doctor at that point, resulted in my being told, poor me, go home and rest, there’s nothing we can do for you. And they think the NHS system is only just broken now? 

There was one symptom which I found more difficult than many of the others, and that was a feeling of detachment. It was almost like having a permanent out of body experience. I was talking to someone, only I wasn’t there. I later learnt it’s a form of psychosis, common in Lyme patients.  

So many Lyme symptoms attacked my non-existent immune system (it is a stealth bacteria, which eventually fools the body into living alongside it), I was, at my worst, headed for a wheelchair.  

Many that know me well, to this day, have no idea that it became so bad. I was raised to put on a brave face. If anyone visited, I acted as normal as I could, even though I was utterly broken. I feel this is the saddest part of the tale to tell. 

Eventually, a turning point, someone being treated for acute Lyme, came to visit. She told me she believed clinically I could be diagnosed immediately with chronic Lyme and recommended a clinic to help. I had nothing to lose. The tests I’d received on the NHS were negative, but this is very common when you have lived with Lyme disease for so long. It is a stealth bacteria, which eventually fools the immune system into living alongside it.

It should be noted that unfortunately, treatment for Lyme disease is one of the most controversial subjects in medicine, and there are no universally-accepted treatment protocols. Also, unfortunately, GPs are often unaware of how to treat Lyme. Thank goodness for Lyme Disease UK, its knowledge and advice were a lifeline. Finding literally thousands of others on their Facebook community page with the exact same symptoms was both empowering and depressing.  

A full diagnosis of Lyme and other infections also spread by ticks, though less talked about, came as a relief and a shock all at once. I knew the outcome for full recovery at this point was bleak, but at least I had a diagnosis and could begin to take the baby steps needed. 

Three years later, I was as good as I was ever going to be. Treatment and protocol in place, I accepted that this was me now. Doing simply one thing would wipe me out for weeks and I would wake feeling ill every day for the rest of my life. Acceptance is powerful though. And just as I accepted the state of play, I became incredibly ill with Covid19. Small wonder with an immune system like mine.  

I was lucky to survive, but luckier than that… the dangerous fever I endured for five days with Covid, meant my brain was fried to the point that other pathogens in my brain and body were zapped. Apparently, there is a thing called fever therapy? It was astonishing, I began to recover, and just kept going. I found myself to be completely well for the first time in over a decade.  

The first thing I noticed was I recovered my sense of smell, which thanks to Lyme had been missing for a long time. This was bizarre when all around me were stories of people losing theirs. Then came the stories of people left suffering with long Covid – many of which shared my Lyme symptoms. It was so odd that my situation was the complete reverse. It is frankly remarkable that Covid cured me, gave me my life back. 

We moved house last year. Something before recovery that I would never have been able to contemplate. Beautiful countryside surrounds us. I put a preventative tick spray on my children and try not to be paranoid about the spread of a disease caused by something so tiny, that if not removed correctly can create such devastation. I count my lucky stars to find myself in a situation where I am once again able to write a feature, a positive feature about recovery. I hope it brings awareness to others. 

It is so important to takeprecautions against being bitten by a tick. Lyme Disease UK is running an annual awareness campaign and encouraging members of the public to take part via