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What is lyme disease?

 What is Lyme disease?

Spending time in nature is frequently linked with wellbeing benefits. The Mental Health Foundation, for instance, says it can be positive for our mental health, from giving us a sense of peace and a boost to our self-esteem, to improved concentration and psychological restoration (i).

But being in the great outdoors, particularly at certain times of the year, can have negative consequences for some people. Hay fever can make enjoying nature tricky for many during the spring and summer (and sometimes also autumn) months. And anyone who has a severe allergy to insect bites or stings may well feel wary about visiting green spaces, especially when the weather’s warm or hot.

Lyme disease is another potential drawback of enjoyable outdoor pursuits such as wandering through woodland, hiking in long grass, camping in a meadow or even spending time in a city park or your own back garden. The good news is Lyme disease isn’t that common in this country, though cases are increasing (this, however, may be because awareness is growing too).

In the US, approximately 30,000 cases of Lyme disease are reported each year – though estimates suggest the real figure may be closer to 476,000 (ii). In Europe, more than 360,000 cases have been reported during the last two decades, says the World Health Organization – though again this may be a significant underestimation (iii). Public Health England, meanwhile, estimates there are up to 3,000 new cases of Lyme disease in England each year (iv), but the real number could well be higher.


What is lyme disease ?

Lyme disease is an infection you can get after being bitten by a tick carrying a bacterium called borrelia burgdorferi – in fact Lyme disease is the most common tick-borne disease in the Northern Hemisphere.


How do you get lyme disease?

Ticks are insect-like creatures called arthropods and are very small, with some being just the size of a pinhead. They survive by feeding off the blood of animals such as deer, cattle, mice, some birds and other small animals. Sometimes they also attach themselves to humans, dogs and other pets if they’re given the chance. If a tick picks up an infection from an animal – such as the bacterium that causes Lyme disease – it can pass on that infection to the next animal or human it bites.

Ticks sense their prey by detecting carbon dioxide when an animal or human exhales. But because they’re so small and their bites don’t usually sting or itch, you may not even realise you’ve been bitten.

Here in the UK, you’re most likely to come into contact with a tick if you spend time in certain tick hotspots such as Exmoor, the New Forest, the South Downs, Thetford Forest, the Lake District, the North York Moors, the Scottish Highlands and parts of Wiltshire, Berkshire, Surrey and West Sussex. This explains why many of the people affected by Lyme disease are forestry and other outdoor workers, as well as holidaymakers visiting these areas.

Then again ticks can be found all over the country, even in gardens and city parks or indeed any place that has long grass.

You can get Lyme disease at any age, but experts believe the peak ages affected are 45-64 and 24-44 (v). More women and girls are affected than men, says one study, with older women most at risk (vi).


What are the symptoms of lyme disease?

The symptoms of Lyme disease can be divided into three different stages:


Stage one

The first thing you may notice after being bitten by an infected tick is a circular red rash that spreads slowly, called erythema migrans. This can develop at any time from three to 36 days after being bitten (typically within seven to 10 days). In the UK, most – but not all – people with Lyme disease have or have had this rash: according to the NHS, one in three people don’t get a rash (vii).

The rash is an early reaction to the infection entering the skin. It’s often easy to spot because it has a distinctive appearance, much like a bull’s eye pattern. The rash starts as a small circular red mark and spreads slowly over a few days, becoming bigger and bigger (it’s typically around 5cm in diameter but can be even larger, up to 30cm). It’s said to look like a target or bull’s eye because the centre of the rash remains red (though it can also be pink or purple) while a paler area of skin develops around it, with the outermost edges red and often feeling slightly raised.

The appearance of the rash can vary, depending on where in the world you were when you were bitten (different countries are populated by ticks infected with different versions of the borrelia bacterium). So while most people in the UK get a rash, if you were infected somewhere else you may not, or the rash may not have that distinctive bull’s eye appearance (it may be red all over, for instance).

Also, while you can get bitten anywhere on your body, common areas where humans are bitten and the erythema migrans rash is found include the leg (often back of the knee), the groin, the armpit, the chest and the trunk (the central or core part of your body, front and back). The rash may also appear on your scalp or hairline (these are particularly common areas in children (viii)).

However, the erythema migrans rash shouldn’t be confused with the rash that can be caused by other insect bites. These usually develop more quickly, soon after you’ve been bitten, and they usually fade relatively quickly too. But if you’ve been bitten by an infected tick the rash usually takes several days to appear, and also typically lasts longer.

Meanwhile, some people with Lyme disease develop mild flu-like symptoms during the early stages (around a third of people are affected (ix)). These symptoms include fatigue, general aches and pains, a high temperature, chills, headache and a stiff neck. Thankfully they only tend to last a few days, even without any treatment.

While in some people the infection doesn’t progress any further, others develop other symptoms in time.


Stage two

More serious symptoms can start weeks or months after you’ve been bitten if you weren’t treated for Lyme disease (or if your immune system hasn’t cleared the infection itself). Different people will experience different issues, but stage two symptoms can include the following:

Joint problems Lyme disease most commonly affects the knee joints, causing anything from mild joint pains to severe inflammation and pain, with episodes lasting for around three months on average. However joint problems aren’t common in people who contracted Lyme disease in the UK or in Europe. But they are more common in Lyme disease cases where the infection was caught in the US.

Neurological problems Nervous system and brain problems are thought to affect 10 per cent of untreated Lyme disease cases, with neurological disorders the second most common type of symptoms after the erythema migrans rash in Europe (v). These symptoms can include inflammation of the nerves, particularly those around the face, causing facial muscle weakness and even paralysis.

Heart problems Some people with untreated Lyme disease can be affected by heart problems such as:

  • Myocarditis (inflammation of the heart muscle causing chest pain, a fast or irregular heartbeat, fatigue and breathlessness)

  • Pericarditis (inflammation of the pericardium, the fluid-filled sac that surrounds and protects the heart, causing a sharp pain in your chest that’s worse when you lie down or when you breathe in deeply)

  • Heart block (disruption of the electrical impulses that control the beating of the heart muscle, causing symptoms such as shortness of breath, palpitations/irregular heartbeats, dizziness and fainting, and nausea)

  • Heart failure (this is when your heart doesn’t pump blood around your body efficiently, the main symptom being breathlessness)

  • Meningitis (inflammation of the membranes that surround the brain and spinal cord) and encephalitis (inflammation of the brain)

Secondary rashes One or more rashes can also appear in areas of the skin other than where the tick bit you. These tend to be smaller than the original erythema migrans rash, and they tend to fade within three to four weeks.


Stage three

Sometimes called late Lyme disease, stage three symptoms can develop long after you were infected, sometimes years later – even after being symptom free for some time. Some of the problems you may experience include:

  • Recurring joint problems (oligoarthritis, or Lyme arthritis)

  • Cognitive problems such as confusion, mood swings, poor memory and difficulties with concentration

  • Balance problems (vertigo)

  • Nerve problems

  • Skin changes such as acrodermatitis chronica atrophicans, which causes patches of abnormal skin

Some of these symptoms can improve if you’re treated for Lyme disease. But a few people develop symptoms that last for a long time despite being treated, which is classed by some as chronic Lyme disease. Others also develop long-lasting fatigue and joint pain, which has been labelled post-Lyme syndrome. However both chronic Lyme disease and post-Lyme syndrome are controversial issues, with many medical experts still unable to agree on what causes their, often disabling, symptoms.

Meanwhile according to the charity Lyme Disease Action there are lots more signs and symptoms associated with Lyme disease (for the full list visit lymediseaseaction.org.uk).


Ticks: what you should know

According to Public Health England around 20 species of tick can be found in the UK, some of which can carry a range of disease-causing organisms, the most common of which is the one that causes Lyme disease (x).

In this country, the tick that’s most likely to bite humans is lxodes ricinus – more commonly called the sheep, castor bean or deer tick. These are most active during the spring, particularly during April to June, which is when you’re most at risk of being bitten.

Ticks need a host to feed on, and they find one by climbing onto the tips of grass and other vegetation, then by climbing onto an animal or human as they brush past them. After feeding for several days, ticks detach themselves from their host and progress to their next host or the next stage of their life cycle (on average, a tick’s life cycle lasts three years).

Ticks are found in areas where there is dense ground coverage and moist air, such as woodlands, grasslands, moorlands and even some urban parks and gardens. And while they may be most active during April to June, they remain active throughout the summer and through to early autumn – in fact they can still be active during the winter when the weather is mild (though not as active as during the spring/summer months).

Not all ticks carry the Lyme disease bacterium. According to Lyme Disease Action, up to 20 per cent of ticks are infected. So even if you’ve been bitten you won’t necessarily develop Lyme disease – indeed the risk from a UK tick bite is very small. If, however, you have been bitten by an infected tick, the risk of the infection passing on to you increases the longer the tick remains attached to your skin (this can be up to seven days if you don’t remove them).

Since there’s no way of knowing whether a tick that has bitten you is carrying the Lyme disease infection, the best thing to do is to keep an eye on the area of skin where you were bitten for several weeks, checking for any signs of a rash. As you may be one of the one in three people who doesn’t get a rash, however, it’s also important to see your GP if you feel unwell after being bitten by a tick.


How to prevent a tick bite

Prevention is the best option when it comes to Lyme disease. So whenever you’re out and about in any areas where there may be ticks during tick season, bear these tips in mind:

  • Whenever possible, wear long sleeve and trousers – consider wearing light-coloured clothing, so that ticks are easy to spot.

  • Avoid long grass, bracken and areas of overgrown vegetation (stick to pathways whenever possible).

  • Use an insect repellent that’s effective against ticks (choose one that contains an active ingredient called DEET, but always check with a health professional before using it as DEET isn’t suitable for everyone).

  • Check your skin and clothing for ticks regularly while you’re out, and again when you get home (check your pets for ticks too).

If you find a tick, remove it as soon as possible using some clean tweezers or a special tick-removal tool (you can get these from pharmacies or from Lyme Disease Action). Grasp the tick as close to the skin as possible and slowly pull it upwards – don’t squeeze, crush or burn the tick, as this can increase the chance of infection. Dispose of the tick when you’ve removed it, then wash your hands thoroughly and clean your skin with some antiseptic or soap and water.

If you don’t have any tweezers or a tick removal tool, Lyme Disease Action recommends using a fine thread instead of waiting. A piece of cotton or some dental floss will do. Tie a single loop of the thread around the part of the tick that’s attached to your skin, as close to your skin as possible. Then pull upwards and outwards – don’t twist.

Instead of disposing of the tick you’ve just removed you can also put it in a sealed plastic container and send it to Public Health England’s Tick Surveillance Scheme – find details about how to do this at gov.uk.


Lyme disease diagnosis and treatment

If it’s caught early, Lyme disease can be treated with antibiotics. Unfortunately the disease is notoriously difficult to diagnose, as it shares many symptoms with other common conditions. The most reliable sign is the spreading rash that develops several days after you’ve been bitten – in fact, doctors are advised to treat people with a typical Lyme disease rash without waiting for the results of any further tests.

Blood tests are available too. The problem, however, is that you should wait a few weeks after being bitten to have one. Indeed while blood tests are helpful, they aren’t always conclusive. That’s because it takes some weeks for your body to develop antibodies to a Lyme disease infection, so testing during the first few weeks after a tick bite often produces a negative result, even in people who do have the disease.

This is why it’s important to be aware of any symptoms that appear after a tick bite. Even if you don’t have a rash but you do have flu-like symptoms, your GP may treat you for Lyme disease without any tests, especially if you know you’ve been bitten. Someone with suspected Lyme disease may also have to be re-tested if their first test produced a negative result.


Effective treatment

If you need treatment for Lyme disease you’ll usually be given antibiotic tablets, capsules or liquid. Most people are prescribed a two to three-week course, but some may need to take antibiotics for longer, depending on the stage of their illness (some may also need intravenous antibiotics at hospital if they’re experiencing symptoms affecting their heart, brain or nerves).

Treatment given during stage one can usually clear the symptoms of Lyme disease and stop you developing any stage two or three symptoms. However, doctors still don’t agree on how to treat persisting symptoms or post-Lyme syndrome. According to Public Health England, if you have systems that are particularly severe or prolonged you may be referred to a specialist (x).


How to help yourself

Living with Lyme disease can be challenging, especially as, awareness about the condition is still quite low here in the UK. It’s also not that common, which can make the experience of having Lyme disease an isolating one. Thankfully there’s lots of support and advice available from charities and support groups such as Lyme Disease Action and Lyme Disease UK. Plus there are things you can do yourself that may help you manage your symptoms and enjoy a better quality of life, such as:

Don’t overdo it Listen to your body and make time for relaxation, even if that means letting others down from time to time. Reducing stress and getting plenty of rest can help with your recovery.

Be kind to yourself As well as taking things more easily try to cut down on stimulants such as caffeine and alcohol, which can rob your body of the energy it needs to cope with your symptoms.

Stay active Even though exercise may be the last thing on your mind, try to do some gentle physical activity whenever you feel up to it. Take it easy though: a short walk is all you need to activate the benefits of exercise. Health experts in the UK recommend 150 minutes of moderate exercise each week, but you may find that too much at first. Just build up to it gradually as you get stronger.

Eat as healthily as you can Try to avoid over-processed, high-sugar or high-fat foods. Give your body the most nutritious fuel you can get your hands on to help it fight the infection. If you have symptoms that are causing pain, choose foods that are thought to help fight inflammation, such as leafy green vegetables, berries and foods that contain omega 3 fatty acids (oily fish, for instance).

Also try eating foods that may help keep your immune system as strong as possible, so that it can fight the infection more effectively. There are more details about eating to boost your immunity in our article How can you strengthen your immune system?

Supplement support Even if you feel you’re eating fairly well, your body may need more nutrients right now. So consider topping up with a good-quality multivitamin and mineral supplement – make sure it has good levels of nutrients needed for a healthy immune system, such as zinc and vitamins A, C and E.

Vitamin D is also thought to play a part in regulating immunity, but many people have low levels – which is why the UK Scientific Advisory Committee on Nutrition suggests all adults and children over the age of four take a daily 10 microgram vitamin D supplement throughout the year (xi).

The recommended form of vitamin D is vitamin D3 or cholecalciferol, as it’s the natural form of vitamin D that the body makes when it’s exposed to sunlight. Vitamin D3 supplements are available in tablet form, and now you can get them in veggie-friendly drops too. However, most vitamin D3 supplements are made from the fat of lamb’s wool, which means they’re unsuitable for vegans. The good news is that vegan vitamin D3 supplements sourced from lichen are now more widely available.

You may also want to consider taking a high-strength fish oil supplement, as fish oils are a great source of omega 3 fatty acids. These fatty acids are widely thought to help with inflammation, and may be particularly helpful if you’re experiencing joint problems (one study, for instance, has found fish oil supplements may help people with osteoarthritis of the knee (xii)).

And now vegetarians and vegans can enjoy the health benefits of taking the omega 3 fatty acids found in oily fish too, thanks to supplements that contain the same fatty acids sourced from algae rather than fish.

Lyme disease may still be relatively rare in the UK, but cases are on the rise. Being aware of ticks and how the disease is transmitted can go a long way towards preventing it. But living with long-term Lyme disease symptoms can be difficult and often debilitating – even getting a diagnosis can be a challenge. However this guide offers suggestions to make your recovery easier. For more information on a range of health conditions, visit our health library.



References:


(i) Available online: https://www.mentalhealth.org.uk/campaigns/thriving-with-nature/guide
 
(ii) Available online: https://www.cdc.gov/lyme/datasurveillance/index.html
 
(iii) Available online: https://www.euro.who.int/__data/assets/pdf_file/0008/246167/Fact-sheet-Lyme-borreliosis-Eng.pdf
 
(iv) Available online: https://cks.nice.org.uk/topics/lyme-disease/background-information/prevalence/
 
(v) Available online: https://patient.info/doctor/lyme-disease-pro
 
(vi) Tullock JSP et al. Characteristics and patient pathways of Lyme disease patients: a retrospective analysis of hospital episode data in England and Wales (1998–2015). BMC Public Health 2019 Aug 15;19(1):931. Available online: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7245-8
 
(vii) Available online: https://www.nhsinform.scot/illnesses-and-conditions/infections-and-poisoning/lyme-disease
 
(viii) Available online: https://patient.info/doctor/erythema-chronicum-migrans
 
(ix) Available online: https://patient.info/infections/lyme-disease-leaflet
 
(x) Available online: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/992436/Be_tick_aware_toolkit.pdf
 
(xi) Available online: https://www.gov.uk/government/publications/sacn-vitamin-d-and-health-report
 
(xii) Hill CL et al. Fish oil in knee osteoarthritis: a randomised clinical trial of low dose versus high dose. Ann Rheum Dis. 2016 Jan;75(1):23-9.Available online: https://ard.bmj.com/content/75/1/23


   

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Our Author - Christine Morgan

Christine

Christine Morgan has been a freelance health and wellbeing journalist for almost 20 years, having written for numerous publications including the Daily Mirror, S Magazine, Top Sante, Healthy, Woman & Home, Zest, Allergy, Healthy Times and Pregnancy & Birth; she has also edited several titles such as Women’ Health, Shine’s Real Health & Beauty and All About Health.

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