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Lyme disease: how nurses can identify it and advise patients

How to detect the tick-borne infectious disease and promote awareness among the public
Lyme disease risks

How to detect the tick-borne infectious disease and promote awareness among the public

  • Lyme disease is caused by bites from infected ticks, which may occur in woodland areas, but also in urban parks
  • It can be difficult to identify, with a wide range of symptoms, but in severe cases can cause long-term neurological and cardiac problems
  • Nurses can advise people on how to mitigate the risk of developing Lyme disease and how to respond if someone has a tick bite

As warm weather and the easing of lockdown restrictions entices more people out to enjoy the countryside and city parks, the risk of individuals being affected by Lyme disease increases.

People walking, running, cycling, having picnics or working in grassy or wooded areas can

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How to detect the tick-borne infectious disease and promote awareness among the public

  • Lyme disease is caused by bites from infected ticks, which may occur in woodland areas, but also in urban parks
  • It can be difficult to identify, with a wide range of symptoms, but in severe cases can cause long-term neurological and cardiac problems
  • Nurses can advise people on how to mitigate the risk of developing Lyme disease and how to respond if someone has a tick bite

Covering up in woodland or long grass may protect against tick bites Picture: iStock

As warm weather and the easing of lockdown restrictions entices more people out to enjoy the countryside and city parks, the risk of individuals being affected by Lyme disease increases.

People walking, running, cycling, having picnics or working in grassy or wooded areas can be exposed to the potentially serious tick-borne infectious disease.

Identifying signs of Lyme disease in primary care and emergency departments


The Borrelia burgdorferi bacteria, which
causes Lyme disease Picture: iStock

Some tiny, spider-like ticks carry the species of Borrelia burgdorferi bacteria that causes Lyme disease and pass it on when they feed on a person’s blood. 

Nurses, especially those in primary care and emergency departments, should be alert to the signs that could suggest someone has been bitten by an infected tick.

The number of cases appears to be on the rise, experts warn, and this doesn’t just seem to be the result of growing awareness of the disease.

Lyme disease can cause a huge range of symptoms, from initial flu-like symptoms, including a high temperature, feeling hot and shivery, headache, muscle and joint pain, tiredness and loss of energy, to long-term rheumatological, neurological and cardiac problems.

This range of symptoms, many of which are quite vague and can be caused by a wide range of conditions, along with the limitations of testing and the fact the tick is often not seen by those affected, make Lyme disease potentially difficult to diagnose.

Symptoms of Lyme disease

The National Institute of Health and Care Excellence (NICE) advises that Lyme disease should be considered in people presenting with several of the following symptoms:

  • Fever and sweats 
  • Swollen glands
  • Malaise 
  • Fatigue
  • Neck pain or stiffness
  • Migratory joint or muscle aches and pain
  • Cognitive impairment, such as memory problems and difficulty concentrating (sometimes described as 'brain fog')
  • Headache
  • Paraesthesiae

Nurses should also consider the possibility of Lyme disease in people presenting with symptoms and signs relating to one or more organ systems, for example:

  • Neurological symptoms, such as facial palsy or other unexplained cranial nerve palsies, meningitis, mononeuritis multiplex or other unexplained radiculopathy; or, rarely, encephalitis, neuropsychiatric presentations or unexplained white matter changes on brain imaging
  • Inflammatory arthritis, affecting one or more joints, that may be fluctuating and migratory 
  • Cardiac problems, such as heart block or pericarditis
  • Eye symptoms, such as uveitis or keratitis 
  • Skin rashes such as acrodermatitis chronica atrophicans or lymphocytoma

Source: NICE Lyme disease guidance

 

Symptoms of Lyme disease range from mild to severe

Chair of the charity Lyme Disease Action Stella Huyshe-Shires says the condition can have a devastating impact on those who are severely affected.


Stella Huyshe-Shires: Lyme disease
can cause 'crushing fatigue'

‘The impact can be really not that noticeable, or to the other extreme where people get very ill. They may get severe headaches and a lot of numbness in their hands, it can be impossible to work and function, and the fatigue can be absolutely crushing. It can be very scary.’

There are about 3,000 laboratory-confirmed cases of lyme disease in the UK each year.

Liverpool School of Tropical Medicine consultant and senior lecturer in infectious diseases Nick Beeching says there is good evidence that the true number infected each year is two to three times higher and some feel it may be up to ten times higher.

The majority of those will have no symptoms or minor flu-like symptoms that disappear as the body clears the disease or they receive treatment.

But a minority of people go on to develop severe symptoms and these can persist even after they have received treatment.

His service in Liverpool, which takes the more complex cases in the region, sees up to 300 patients a year who might have Lyme disease. It is not known what causes some people to develop chronic complications while others can clear the infection within a few weeks without treatment.

‘It is generally agreed that the number of people who are infected with Lyme disease is increasing, but we don’t know why,’ Dr Beeching says.

NICE guidance raised awareness of the disease 

The publication of Lyme disease guidance by the National Institute for Health and Care Excellence (NICE) in 2018 was seen as a significant step forward by campaigners in raising awareness of the condition among healthcare professionals.

This guidance stated clearly that Lyme disease should be diagnosed in people who present with erythema migrans, the so-called bull's eye rash, without the need for any further testing.

These distinctive rashes tend to increase in size and may sometimes have a central clearing. They are not usually itchy, hot or painful and they become visible from one to four weeks (but can appear from three days to three months) after a tick bite and last for several weeks. They are usually at the site of a tick bite. 


Erythema migrans, the bull's eye rash common in cases of Lyme disease Picture: iStock

NICE says these rashes should be separated from a tick bite reaction, which usually recedes within 48 hours of the person being bitten, tends to be hot, itchy and painful, and may be caused by an inflammatory reaction or infection with a common skin pathogen.

Lyme disease should not be diagnosed in people who have a tick bite but no symptoms.

The longer the tick is attached, the higher the risk of contracting lyme disease.

The standard treatment recommended by NICE is the oral antibiotic doxycycline, taken for 21 days.

What are the benefits of early treatment?


Nick Beeching: 'Early treatment
seems to be beneficial'

Dr Beeching says it is essential that practice and other nurses know to look for the rash and ensure that prompt antibiotic treatment is offered.

‘Early treatment seems to be beneficial,’ he says. ‘But in the past too many doctors were doing tests that were carried out too soon for the body to develop the antibodies that the test looks for. The NICE guidance is clear that this is not necessary and that antibiotics should be given straight away.’

If there is no erythema migrans, use a combination of clinical presentation and laboratory testing to guide diagnosis and treatment.

If there is high clinical suspicion that the person could have Lyme disease, antibiotics should be started straight away, without waiting for the results.

Cases occur outside what might be seen as Lyme disease hotspots

While the majority of cases occur in southern England and Scotland, Dr Beeching says they can happen anywhere in the UK and bull’s eye rashes should not be ignored because the individual is considered not to live in a Lyme disease hot spot.

‘Ticks with Lyme disease are more widespread than many nurses and doctors appreciate. I have seen cases that have occurred from a tick bite received in a Liverpool park, so people can be infected in rural and urban settings,’ Dr Beeching says.

Healthcare staff should also be aware that about a third of patients with Lyme disease will not have noticed a tick bite or seen a tick, as it will have fallen off before they realised. Therefore, when taking a history, Lyme disease shouldn’t automatically be ruled out for people who say they haven’t been bitten. 

‘Diagnosing Lyme disease is often about sitting down with a patient and talking to them about when it first started and how they felt then. Nurses are good at this’

Stella Huyshe-Shires, chair of Lyme Disease Action 

History-taking should cover activities that might have exposed the patient to ticks and travel to areas where Lyme disease is known to be highly prevalent.

Ms Huyshe-Shires says nurses can often be key to diagnosing Lyme disease, as it can require a more holistic approach.

‘It is often about sitting down with a patient and talking to them about when it first started and how they felt then. Nurses are good at this. People might be more likely to mention to a nurse that it came on suddenly after they went camping or walking, while a GP may have sat and looked at the computer. That little bit of information can make the difference.’

For practice nurses and other staff keen to find out more, the Royal College of General Practitioners has a useful toolkit.

Preventing and treating Lyme disease: what to tell patients

Nurses have a key role in advising and educating members of the public on what Lyme disease is and how they can reduce their risk of infection.


Ticks should be removed by grasping
with tweezers as close to the skin as
possible Picture: iStock

NICE says this advice should include where ticks are found, which is woodland and grassy areas, including city parks, and that people should cover exposed skin and use insect repellents when they are in these areas.

Public Health England recommends people stick to defined paths in such areas, to avoid brushing against vegetation, and wear light-coloured clothes so ticks can be spotted and brushed off.

People should get in the habit of checking their clothes and body regularly for ticks when outdoors and again when home. Children and pets should be checked as well.

Ticks prefer warm, moist places on the body, such as the groin, waist, armpits, behind the knee and hairlines, so look out for anything as tiny as a freckle or a speck of dirt. Young children are commonly bitten on the head, so need to be carefully checked around the neck, in and behind the ears and along the hairline.

When bitten, people should remove ticks as quickly as possible with a pair of fine-tipped tweezers or a tick removal tool.

Grasp the tick as close to the skin as possible and pull upwards slowly and firmly as mouthparts left in the skin can cause local infection. Clean the bite area and monitor it for several weeks.

Source: NICE Lyme disease guidance and PHE advice

 

Limitations of tests for Lyme disease

The NHS uses a two-tier blood test system that looks for antibodies to the bacteria that cause Lyme disease. This is known as serology. If the initial test is not clear or positive then a second test, called an immunoblot test, is carried out to confirm the diagnosis.

But the NICE guidance is also clear that patients should be told about the limitations of Lyme disease tests, which mean that both false-positive and false-negative results can occur.

Of particular note is that if the test is done too soon and antibodies have not developed sufficiently, it is possible for these tests to be negative despite active infection.

NICE also states that tests from unaccredited laboratories should not be used as they may not reach UK standards.

An area of concern for healthcare professionals is that people who feel they have Lyme disease but who feel they have been misdiagnosed, or have received a negative test from the NHS, may seek potentially unreliable results from abroad.

‘Some people are spending thousands of pounds sending off for results in labs in other countries, often in Germany or the United States,’ says Dr Beeching.

‘In my experience, most of those that really have Lyme disease will have positive serological test results confirming the disease. But there are many people who think they have Lyme disease, generally with negative NHS test results and who may have received a positive result from an overseas test.

‘It is important to keep an open mind and investigate some people further, depending on their story, especially those with neurological symptoms. However, after careful assessments, we often rule out Lyme disease as the cause.

‘The symptoms of Lyme disease can have a significant overlap with those of chronic fatigue syndrome’

Nick Beeching, consultant and senior lecturer in infectious diseases, Liverpool School of Tropical Medicine

‘We cannot always provide a firm alternative diagnosis, which is frustrating for both patient and clinician. The symptoms of Lyme disease can have a significant overlap with those of chronic fatigue syndrome. People who we think are more likely to have chronic fatigue syndrome or fibromyalgia are not always pleased with that diagnosis.’

The NICE guidance alludes to this issue. It says patients should be advised that the symptoms and signs associated with Lyme disease overlap with those of other conditions and they will be assessed for alternative diagnoses if their tests are negative and their symptoms have not resolved.

‘Symptoms such as tiredness, headache and muscle pain are common and a specific medical cause is often not found,’ the guidance says.

Concerns about misdiagnosis of Lyme disease during the COVID-19 pandemic

Campaigners are concerned that the pandemic means that cases of Lyme disease could be missed as it may be assumed that the person has COVID-19.

Ms Huyshe-Shires says there is some crossover in the symptoms of COVID-19 and Lyme disease.

‘If a nurse has COVID-19 in their mind, that might be what they see when speaking to a patient,’ she says. ‘The Lyme disease may be picked up later on, but it is difficult to know.’

View our COVID-19 resources centre


Erin Dean is a health journalist


Further information

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