Everything you need to know about Lyme disease

Lyme disease cases have steadily risen since data collection began in 2015. In 2021, there were 1,156 laboratory-confirmed cases in England and Wales. It's also estimated that between 1,000 and 2,000 additional cases are diagnosed each year by doctors without testing [1]. 

Infections now occur regularly in many parts of the UK and infected ticks have been found in every region. So, if you’re planning to enjoy the great outdoors this summer, it’s important to take steps to protect yourself. 

We look at how you can avoid tick bites, recognise the signs and symptoms of infection, and when to seek medical assistance.

What is Lyme disease?
 

Lyme disease is an infection commonly caused by the bacterium, Borrelia burgdorferi. This bacterium is spread to humans by bites from infected ticks — tiny, spider-like creatures that feed on the blood of birds and mammals, including humans. 

Not all ticks carry the infection and not all bites from infected ticks result in transmission. However, it’s important to be aware of the risks of tick bites and take action to avoid them. If Lyme disease is left untreated, it can lead to serious health conditions like meningitis or heart failure. 

Where am I at risk?
 

Ticks are usually found in woodland, heathlands, and grassy areas. So, you’re more at risk of being bitten if you enjoy outdoor activities like hiking, cycling, and camping. You might also encounter ticks while walking in other green spaces like urban parks and gardens.

Ticks are usually most active from April to July, and sometimes later in the autumn. Although they’re much less active in the winter months, they may still be on the lookout for food. So, it’s important to take precautions to avoid bites at any time of year.

Why are cases of Lyme disease on the rise in the UK?

The rise in cases is probably due to a combination of factors, including increased awareness of the infection and better access to diagnostics.

Tick populations are also growing and becoming more widespread. Climate change is thought to be one of the drivers behind increasing tick numbers, with warmer temperatures creating more suitable habitats for them to thrive [2]. 

What are the symptoms of Lyme disease?
 

Early signs of infection can include mild flu-like symptoms such as:

• A high temperature (fever)
• Chills
• Feeling tired all the time (fatigue)
• Headaches 
• Muscle and joint pain 
• Neck stiffness

Sometimes, symptoms are accompanied by an expanding bulls-eye rash at the site of the tick bite. This usually develops within one to four weeks of being bitten.

Not everyone who is infected gets a Lyme disease rash. But if you do develop a rash like this, it's important to take a photo of it to show to your doctor, as it can quickly disappear.

Other symptoms can include nerve pain, facial droop, and numbness or tingling in your hands or feet.

Is Lyme disease contagious?

Lyme disease cannot be spread from one person to another. Transmission of the bacterium from an infected pregnant woman to a foetus is possible but very rare.

How do I know if I have Lyme disease?
 

The first step to check if you have Lyme disease is usually a blood test, but if you have symptoms, don’t delay seeing your GP. Our Lyme disease blood test checks for antibodies against Borrelia burgdorferi, the most common bacterium to cause the infection.

If you don’t have any symptoms, wait at least six weeks after the suspected exposure before taking a Lyme disease test. It takes time for the antibodies to reach levels that can be detected, so you could get a false-negative result if you take the test too soon.

It’s also possible to get a positive test result when you don’t have the infection (a false-positive result). This is more likely to happen if you have glandular fever, rheumatoid arthritis, or another autoimmune condition.

If you get a positive result, your doctor may arrange an immunoblot (IgG Western Blot) confirmation test. 

If you’re experiencing any symptoms, you should see your doctor immediately. A diagnosis of Lyme disease is based on tests, a physical examination, and your symptoms. There’s no conclusive test for Lyme disease, so it cannot be diagnosed through a blood test alone. 

How is Lyme disease treated?
 

The recommended treatment for Lyme disease is a course of antibiotics. This treatment is usually most effective in the early stages of the infection.

Currently, there’s no vaccine licensed for human use, although some are in development.

Is Lyme disease curable?

Most people with Lyme disease get better after a course of antibiotics. But even after treatment, some people continue to have symptoms for months or even years later.

These can include fatigue, joint pain, and stiffness. However, they usually improve over time. Early diagnosis and treatment can help prevent more severe symptoms and complications.

Lyme disease complications
 

If an infection is left untreated, or not treated early, bacteria can multiply and spread. This can affect many areas of the body such as joints, the heart, and the nervous system.

Complications of Lyme disease include:

• Difficulty concentrating
• Heart problems
• Memory problems
• Nerve problems such as numbness or pain in your limbs
• Pain and swelling in your joints
• Sight and hearing problems

Some people go on to develop long-term symptoms similar to those of fibromyalgia or chronic fatigue syndrome. It’s not known exactly why this happens and it’s likely related to overactivity of the immune system rather than continued infection.

How to avoid tick bites
 

If you’re planning to spend time in woodland or grassland areas, there are some simple precautions you can take to avoid tick bites.

Top tips for avoiding tick bites:

• Wear clothes that cover your skin and tuck your trousers into your socks.
• Use an insect repellent that contains DEET.
• Wear light-coloured clothes to make spotting ticks as easy as possible.
• Stick to paths and avoid brushing against long grass or other vegetation where ticks might be present (ticks can’t fly or jump, so they hitch a ride on animals or humans as they brush past).
• Regularly check your clothing and exposed skin for ticks and brush them off immediately.

It’s important to be vigilant as ticks are very small (about the size of a pinhead). Their saliva has anaesthetic properties, so you probably won’t notice if you’ve been bitten.

How to remove a tick 
 

If you’ve been bitten by a tick, try to remove it as soon as possible to reduce the risk of getting a tick-borne infection.

Four steps to remove ticks:

1. Using fine-tipped tweezers, gently grip the tick as close to your skin as possible to ensure you remove the head and mouth.
2. Pull the tick steadily away from your skin, without twisting or crushing it.
3. After you’ve removed the tick, wash your skin with soap and water.
4. Apply an antiseptic cream to the skin around the bite.

Once the tick is removed, keep an eye on the area where you were bitten. If you develop any Lyme disease symptoms, see your doctor.

Enjoy the outdoors safely
 

Now you know all about prevention and early detection, there’s no reason why Lyme disease should stop you from enjoying time outdoors.

Take precautions to avoid tick bites and look out for any warning signs of infection so you can take prompt action. Lyme Disease UK has more advice and guidance for keeping yourself safe this summer.

References

1. GOV.UK. (2022) Lyme disease epidemiology and surveillance. Available at: https://www.gov.uk/government/publications/lyme-borreliosis-epidemiology/lyme-borreliosis-epidemiology-and-surveillance (Accessed: 11 April 2024).
2. Li, S., Gilbert, L., Vanwambeke, S., Yu, J., Purse, B. and Harrison, P. (2019) Lyme Disease Risks in Europe under Multiple Uncertain Drivers of Change. Environmental Health Perspectives, 127(6), p.067010.