Dr Nicola L. is a biologist working in Cambridge. Since 2018, her now 18-year-old son has been seriously ill with Lyme disease. For Lyme Disease Awareness Month, Nicola spoke to Clare Sansom for East Anglia Bylines about the dangers of this disease, problems with its treatment and what we can do to protect ourselves.
CS: Tell me briefly the story of your son’s illness – how did it start, how did you get to the Lyme diagnosis and what treatment was he given?
NL: We don’t know exactly when it started. At the start of 2018, our son was a happy, healthy 13-year-old doing very well at school and enjoying sports. A year later he was struggling with pain, exhaustion, vision problems and debilitating ‘brain fog’. His symptoms continued with no respite into 2020, at which point our GP finally ordered blood tests. Results came back positive for Lyme disease, which is caused by Borrelia bacteria. He took two short courses of antibiotics during that year with no improvement; he stopped attending school in April 2020.
In November 2020 after a referral to Infectious Diseases at Addenbrookes and a second blood test, he was finally prescribed a three-week course of intravenous ceftriaxone, as recommended by NICE for patients with Lyme disease affecting the central nervous system (which his clearly was). This led to some improvement in 2021, particularly in his eyesight and concentration.
CS: What is the situation now?
NL: The improvement we saw after the ceftriaxone has largely been maintained, but there is little further change. He is too unwell to return to school or socialise. He can concentrate for long enough to play Sudoku, do some Duolingo or follow a movie before needing to rest. The NHS have told us no more treatment is available, so we have had to seek private treatment from an international expert on Lyme, which is ongoing.
Spotting the danger
CS: How is Lyme disease transmitted?
The Lyme bacteria are carried by infected ticks: mainly the castor bean tick (Ixodes ricinus), which is common throughout Europe including the UK. This tick is found in woodlands and forests where its animal hosts – large mammals such as deer – are plentiful. All large mammals are susceptible to tick bites, including humans. When infection occurs, the first sign is often a characteristic circular rash at the site of the tick bite.
CS: What do you think were the main reasons for the delays and misdiagnoses that he experienced along the way?
NL: In the UK, doctors often think of Lyme as a rare disease and therefore don’t consider it as a diagnosis unless there is clear evidence of a tick bite or rash. Without these obvious signs, the first symptoms are insidious, and patients are often very sick before their symptoms are taken seriously. My son had not noticed the tick-bite (ticks are stealth biters) and had no rash. His antibiotics, particularly the doxycycline, would have been much more effective if they had been given earlier.
CS: Are cases of Lyme disease increasing?
NL: The ticks’ active period is certainly increasing: they search for blood meals when the temperature is above 7oC, so global heating leads to a longer biting season. Anecdotally, the disease is increasing, but because we don’t know how many GP-diagnosed cases there are, this is difficult to answer. Lyme is not yet a notifiable disease here.
Prevention and treatment
CS: What can we do to avoid tick bites?
NL: Don’t avoid the countryside – being outdoors is beneficial in so many ways! But ticks are found in thick vegetation and long grass, so stick to well-maintained paths whenever possible. Use insect repellent and wear long trousers, preferably light-coloured ones so ticks can be seen easily. Tucking trousers into socks will prevent ticks from crawling up your legs. And always check children and pets for ticks when they come inside.
CS: What should we do if we are bitten, to avoid infection?
NL: If we spot an attached tick, it should be removed as soon as possible, preferably using a tick removal tool. These tools are designed to avoid squashing the tick’s body and are very cheap.
Protecting our pets and ourselves
CS: Is there a danger to pets?
NL: Yes; mainly dogs, as they often run through the long grass that harbours ticks. In spring and summer vets frequently remove ticks from dogs. In fact, vets generally know much more about ticks and Lyme than GPs do!
CS: What can we as citizens do?
NL: Keep aware of the danger (ticks can carry other diseases, too), follow these precautions whenever you go into the countryside, and ask your family and friends to do the same. A research group in Glasgow is asking ‘citizen scientists’ across the UK to submit sightings (and photos) of ticks via a web form, to build up a better picture of their prevalence.
CS: Is there anything we should be asking doctors and other responsible people to do?
NL: We can encourage GPs to take a short course on Lyme disease that has been developed by the Royal College of General Practitioners, and to display information in their surgeries. We can also ask wardens of open spaces to display the same information clearly for visitors, and write to our MPs to lobby for Lyme to become a notifiable disease.
CS: Didn’t Cambridge Science Festival have something about it this year?
NL: Yes! They organised a hands-on display about ticks and Lyme in the Pathology department for the festival’s Family Day on March 25. Visitors could look at ticks through microscopes, handle some tick removal tools and discuss tick-bite prevention.
CS: Thank you very much, Nicola, and good luck with your valuable work to raise awareness of ticks and Lyme.