My health story: Lyme disease

Lesley Dobson / 24 July 2018

It took just one tiny tick bite to give me a seriously degenerating condition resulting in a six-year fight back towards better health, says Andrew Gold.



Living in the Scottish Highlands, I knew about the dangers of bites from ticks carrying Lyme disease. I’d had tick bites every year but had the tools you need to remove them quickly and safely [see FAQs, below].

Only about 6% of ticks carry Lyme disease. Even if you are bitten by a tick, the chances of you being unlucky and actually getting Lyme disease are relatively small. But an estimated 3,000 people in the UK contract the condition each year. Unfortunately for me, in 2012 when I was 65, I missed an infected tick that was attached to my back for a couple of days.

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Factfile

Name: Andrew Gold

Age: 71

Condition: Lyme disease

Symptoms: Cramp, twitching, muscle pain and weakness

Treatment: Strong oral antibiotics, and referral to an infectious disease consultant

Recovery: Though Andrew’s condition has improved markedly, he still has bad days when he has no energy, has pain and cramp, and feels generally unwell

Ongoing problems/ medication: Sleeping pills to help with long-term sleep disruption, and analgesics for pain

The bull's-eye rash

A common early symptom of Lyme disease is erythema migrans (EM), a roundish bull’s-eye type of rash that may be around the site of the tick bite. I didn’t have this. It was only after the disease had begun to spread that I became noticeably unwell. This happened around two months after I was bitten.

It started with a lot of cramp and twitching, plus muscle pain and weakness. I had to keep sitting down as I didn’t have any strength and I also became a very poor sleeper. A whole lot of different problems emerged at once, so I went to my GP, but he was away. Two locum doctors who saw me didn’t recognise the symptoms of Lyme disease and were no help at all.

Tests for Lyme disease

When my usual GP returned, he sent my blood off for tests. They came back positive for Lyme disease and I began a course of antibiotics. Within a week, I had to stop as I had developed a deep vein thrombosis (DVT). My symptoms simply got worse.

I had a weird, crawling sensation under my skin. It was as if there was something living inside me. I could feel this ‘thing’ moving around – but it was my nerves being attacked by Lyme disease.

My cognitive function also declined quite badly. I was developing a computer application for the Civil Service, but things got so bad that I’d go to work, turn on my computer, and not know what to do next. This type of problem is not uncommon in people suffering from Lyme disease. I know people who’ve got into their car and not known how to start it.

I also couldn’t communicate – I wouldn’t be able to finish a sentence and became word-blind. It can be very scary if you start to lose your grip on things that you’ve done all your life.

By this stage, having been referred to an infectious diseases consultant, I knew Lyme disease was the cause of these problems. My GP was very supportive and agreed to put me through an unusually aggressive antibiotic treatment, which went on for months.

I finished my treatment in 2013 and gradually got quite a lot better. But in 2016 I felt unwell again. We had moved to Devon, so I saw a different GP, and told him I wondered if I was having a relapse. He referred me to a neurologist, who’s done all sorts of tests and we are still working through the results.

Once Lyme disease spreads, you tend to get several things going on, and from patient to patient they may differ. However, having a raft of new problems should ring alarm bells. That said, Lyme disease symptoms can mimic those of many other diseases. Unless you’ve been in an area where the risk of a tick bite is known, or you are aware that a tick has bitten you, your symptoms are as likely to be caused by something else.

I’m much better than I was – at one time I couldn’t function at all – but I still have occasional pain, plus energy and sleep problems. I’m often awake at least twice a night, and up at 5am – and that’s with half a sleeping tablet. Lyme disease doesn’t just affect the person who has it. My wife has suffered almost as much as I have. It has changed our lives completely.  

FAQs: What you need to know about Lyme disease

What are the symptoms of Lyme disease?

Apart from the EM bull’s-eye type rash, symptoms can include tiredness, aches and pains, sweating, fever and neck stiffness, plus strange skin sensations, such as numbness and the feeling that something is moving under your skin.

Where are ticks commonly found?

High- to medium-risk areas of the UK are East Anglia, the South West (including Wiltshire, the New Forest, Exmoor), the South Downs, West Sussex, Surrey, Norfolk, the North Yorkshire moors and the Scottish Highlands.

How can I avoid a tick bite?

Before you go walking in areas that might contain ticks, cover your skin with long-sleeved tops and trousers tucked in to your socks.

Use an insect repellent containing DEET (diethyltoluamide) on exposed skin. Keep to paths – avoid tall grass if you can. Wear light-coloured clothes, so you can see and remove ticks more easily. Carry a tick remover to use as soon as you sense you’ve been bitten. Pictured above left: the O’Tom Tick Twister, £5.50 (lymediseaseaction.org.uk).

What is the treatment for Lyme disease?

GPs should prescribe antibiotics. If the first course fails to resolve it, then a second course of different antibiotics should be considered. If this doesn’t help, the patient should be referred to a specialist.



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