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Would my son have his Lyme disease diagnosis without my mother's instinct? It's time we trusted our patients

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My battle as a parent against Lyme disease

Source: Science Photo Library

For eight years, my son has been fighting a war against Lyme disease, with me alongside him.

I have endured countless sleepless nights, anxious that I am pushing too hard, but more troubled I have not done enough; fearful of backlash from respected colleagues over antibiotic prescribing, yet utterly convinced that doing nothing is no longer a viable option.

I have waged battles against countless healthcare professionals who failed to recognise the severe consequences of a missed diagnosis, inappropriate treatment, and worse: telling a patient it’s all in their head.

My boy, who climbed the hills of Scotland, effortlessly completed Duke of Edinburgh expeditions and won a three-week adventure scholarship, has now been floored by illness and reduced to bed-bound life. All at 25 years old, and all because of a tick bite he suffered in his teens.

I am his mother, but also his full-time carer and advocate. The role constantly surprises and exhausts me. I‘m not just his chef, catering for special dietary needs to boost his immune system, but also his confidante and his counsellor when the thought of being helpless and homeless without me completely overwhelms him.

You see, he has given up on the prospect of ever being well again. He no longer expects to enjoy freedom: to get out and live life again, to ever hold down a job, to live independently, to socialise with friends, to travel. He doesn’t think he will ever climb those hills again. And these morbid thoughts often consume him in the small hours of the night when his resilience is at its lowest. And that is where I am needed most — as a mum, as a pharmacist, as an advocate.

Looking back, his health began to deteriorate in his final school years. He labelled himself a ‘lazy boy’ because he was always tired, while we constantly pushed him to get up, get out, do more. He was excited about going to the University of Aberdeen, but within just three weeks of starting, everything came crashing down when he couldn’t get out of bed.

His vision was blurred, and his muscles twitched and hurt. He had insomnia, headaches, panic attacks, nausea, pain in the soles of his feet, low mood, severe fatigue, lethargy, breathlessness — the list of symptoms went on. He was prescribed antidepressants, but despite being a pharmacist and wondering whether this was the right option, I felt hopeless to argue, just in case my mother’s instinct was wrong. 

Devastatingly, university was over for him before it had even begun.

Once home again, it was a struggle to persuade our GP to give my son a Lyme disease test on the NHS, but I recognised that his symptoms were similar to that of a relative, who had been diagnosed with the disease. The result came back negative and, although bewildered, I believed it.

The next three years were spent circling through doctors, psychiatrists and psychologists, until one day his clinical psychologist agreed that his illness was physiological. I was exhilarated that someone finally believed me and my son.

But the infectious diseases specialist surmised it was chronic fatigue and not Lyme disease. And yet, my mother’s instinct and my pharmacist’s intuition told me this was much more than chronic fatigue. I was at one of my lowest points. I knew, then, we were fighting this battle on our own.

It was only after undergoing expensive private testing that my son was diagnosed with numerous tick-borne infections. Today, he struggles with fatigue, brain fog, memory loss and occasional joint pain. But, thankfully, so many of the original symptoms have resolved following long-term antibiotic treatment and immune support.

However, chronic Lyme disease — or post-treatment Lyme disease syndrome — is still not recognised as an ongoing infection by the NHS. It is a controversial subject, and recent guidelines from the National Institute for Health and Care Excellence admit that research is lacking and the evidence base is weak.

“One thing worse than no test is a bad test,” said Chris Witty, the chief medical officer for England, during the coronavirus pandemic. And I couldn’t agree more.

We need better and more reliable tests for Lyme disease and other tick-borne infections. Current Lyme disease testing is letting patients down and many are receiving ‘false negative’ results. Consequently, no diagnosis or treatment follows.

I have met dozens of people with similar symptoms and experiences. There are currently more than 11,000 members on the Lyme Disease UK Facebook community group, which is there for advice and support. While they may not all have Lyme disease, I wonder how so many thousands could be wrong.

We need to put more trust in the patient and their experience. Acknowledging that their symptoms and suffering are not ‘purely psychological’ would indeed be progress. Healthcare professionals should admit that we don’t always know what’s wrong; offer reassurance that we genuinely believe our patients; and remain open-minded. This kind of support would be a lifeline for people like my son.

Arlene Brailey is a pharmacist and trustee of the Lyme Resource Centre

Readers' comments (2)

  • This is an all too familiar story of the misdiagnosed of Lyme disease. The illness is believed to be rare within the NHS but the truth is that the illness is common, it’s the accuracy of the testing that is rare! After 3 negative tests results, I decided my only route was to have private testing in Germany. My private tests were positive! My years of struggling and being denied I was ill were over, I finally had proof, it was time to start my healing protocol alone! I’ve never looked back and I’m fit and well again (19 years into the illness now). You can read my story at www.ticktools.net. Take care and beware the tick. Lisa “Lyme” Vallo.

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  • Thank you Arlene for sharing this superbly written very personal account of the suffering and medical battles your son and you have endured for many years.

    I don't have Lyme disease but suffer with chronic pain following an adverse reaction to ciprofloxacin in 2013 - so much of what you describe resonates strongly with my experiences as a patient (and a pharmacist) suffering with a condition which is poorly recognised with lack of research and suitable treatments.

    Your last paragraph is absolutely spot on. There is now far too much emphasis on guidelines and 'proof' and not enough belief in patient's experiences and symptoms.

    I do now have clinicians who believe my story and are trying to help me hence totally understand what you mean by feeling 'exhilarated' when this happens.

    Scepticism amongst healthcare professionals is one thing but disbelief, being belittled, patronised, traumatised, dismissed and labelled as suffering with purely psychiatric/ psychological issues is unacceptable.

    I found it particularly upsetting when certain clinicians have said to me 'as a pharmacist you should know better' or 'as a pharmacist you know what it's like’.

    There are many times when I felt like I was walking into an exam when seeing doctors particularly when it was a first consultation with a highly qualified and highly respected clinician at a centre of excellence.

    Having to repeatedly justify my symptoms and try to convince sceptical doctors of the cause is very difficult to do when you’re in pain and suffering.

    I hope your son continues to make a full recovery and you continue to help others with Lyme disease.

    Thank you again.

    Jane Allan

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