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27th May 2019

The birthday walk that changed my life

When Susan Small found out she had Lyme disease, she was in a state of disbelief. She spent most of her time in the city and had never even seen a tick.

“I was infected following a tick bite after a countryside walk in Scotland on my birthday in May 2017. I had no idea I’d been bitten and that nymph ticks are most likely to transmit infection as they can be so tiny, they’re more likely to go unnoticed,” she tells This Is MedTech. “Soon after the bite, I noticed a rash below my waistline which I self-treated with hydrocortisone cream. I wasn’t concerned as the rash wasn’t itchy or uncomfortable and was nondescript – not the typical ‘bulls-eye’ pattern associated with Lyme.”

Lyme disease, or Lyme borreliosis, is a bacterial disease transmitted to humans through the bite of infected ticks, which are mainly found in grassy and wooded areas, including urban gardens and parks. The number of cases in Europe has increased steadily, with over 360,000 cases reported over the last two decades, according to the European Centre for Disease Prevention and Control. Many people with early-stage Lyme disease develop a distinctive circular rash at the site of the tick bite known as ‘erythema migrans’, which is often described as looking like a bull’s-eye on a dart board. However, the rash can also be atypical and have no particular shape. Moreover, around one in every three people with Lyme disease do not report seeing a rash at all.

If not caught and treated early, flu-like symptoms, headaches, fatigue, joint pain and behavioural changes can follow as the infection spreads throughout the body, potentially leading to organ damage and long-term health problems.

Time passed and Susan started experiencing significant fatigue. “I initially thought this was due to ulcerative colitis and unfortunately I didn’t make a connection with the rash,” she remembers. “I’d been continuing my normal life, working hard, walking, trying to push myself despite feeling increasingly unwell, albeit with increasing difficulty.” Finally, in August, Susan saw her GP, who thought the fatigue was likely related to peri-menopause and did a blood test. “I didn’t mention the rash at that point. At age 46 I considered peri-menopause to be plausible. The blood results showed abnormal liver results, peri-menopause and a possible viral infection,” she comments.

When Susan went back to her GP after receiving the blood results, she was aware that the rash had expanded quite considerably and that was when she began to suspect Lyme disease. “In addition to the debilitating fatigue, I was experiencing flushing and sweats, heart palpitations and dizziness. This time my GP sent off a Lyme disease blood test, however, she didn’t clinically diagnose Lyme based on my symptoms or prescribe antibiotics.” It was only a week later that Susan’s gastroenterologist noticed the rash and clinically diagnosed Lyme, putting her on a course of antibiotics straight away. The blood test results came back later, confirming that she had Lyme disease.

Lyme disease can be difficult to diagnose. It has similar symptoms to other conditions and there tends to be a lack of awareness about the disease and the potential for the transmission of other infections (co-infections) at the same time. A standard blood test like the one Susan had can help confirm Lyme disease by detecting Lyme disease antibodies, which the immune system produces to fight off the infection.

However, if the test is carried out too soon, it can produce a false negative as the body doesn’t start producing antibodies to the Lyme disease bacteria for 4-6 weeks, notes charity Lyme Disease UK. Also, if a person’s immune system is weak, the antibodies may not always be detected. Doctors are therefore advised not to rule out Lyme if a patient is showing symptoms, but the test comes back negative.

Unfortunately, there’s currently no test to confirm when the body is free of infection. “Several months after having been told by doctors that I’d had ‘adequate’ antibiotic treatment, I knew I wasn’t getting any better. I got to the stage where I kept having days where I felt woozy and dizzy, and really struggled to remain at work,” says Susan. “In May 2018, after a year of struggling with symptoms, I decided to see Dr. Jack Lambert, a specialist in treating infections in immuno-compromised patients.”

He called for additional, more sensitive blood tests, which picked up the Lyme disease antibodies and revealed that she was co-infected with Chlamydia Pneumaniae and Ehrlichia/Anaplasma. “These results, along with clinical diagnosis based on symptoms, have guided him in my treatment therapy since then. Fortunately, I am making good progress with the treatment and I feel very lucky,” she says.

Lyme Disease Awareness Month, which takes place every May, is aimed at educating everybody, including patients, clinicians and pharmacists, about the disease. To lend her support, Susan is doing a sponsored 5k walk with her family for Caudwell LymeCo, a Lyme Disease UK sister charity. “I feel it’s so very important to raise awareness of this poorly understood and debilitating condition.”