It’s estimated that more than one in every 10 people with tick-borne encephalitis will develop long-term or permanent complications as a result of the condition.

Problems that can occur include:

• memory problems
• personality and behavioural changes
• speech and language problems (aphasia)
• epilepsy – a condition that affects the brain and causes regular seizures (fits)
• changes in emotions, such as mood swings
• problems with attention, concentrating, planning and problem solving
• problems with movement
• low mood
• fatigue (extreme tiredness)

Individual care plans

If you do develop these problems, a number of different specialists may be involved in your care while you recover in hospital and when you return home. These may include:

• a neuropsychologist – a healthcare professional specialising in brain injury and rehabilitation
• an occupational therapist – who can identify problem areas in a person’s everyday life, such as dressing or getting to the shops, and help them devise practical solutions
• a physiotherapist – a therapist who uses physical methods, such as massage, manipulation and exercise
• a speech and language therapist – who uses specialist techniques to improve all aspects of communication

Before being discharged from hospital, your health and social care needs will be fully assessed and an individual care plan drawn up to meet those needs.

If you are the primary carer of someone who is recovering from TBE, such as their spouse or parent, you should be invited to discussions about the care plan, and your own circumstances and requirements should be taken into account.

You should also be given information about support services available in your local community.

The care and support section of the website provides useful information and advice about caring for someone. In particular, you may find the new to caring section useful.

Caring for someone with emotional and behavioural problems can be stressful, so it is important you do not neglect your own mental and physical wellbeing. See carer wellbeing for more information and advice.

Further help

The Encephalitis Society can provide you with appropriate sources of information and recommend the right professionals to help you in your situation. It can be contacted on 01653 699 599.

Tick-borne encephalitis (TBE) is a viral infection spread to humans by the bite of a small spider-like parasite called a tick.

Initial symptoms of TBE are similar to flu and can include:

• a high temperature (fever)
• a headache 
• tiredness 
• muscle pain

These symptoms usually last for up to eight days, after which point most people make a full recovery.

However, some people will go on to develop more serious symptoms caused by the virus spreading to the layer of protective tissue that covers the brain and spinal cord (meningitis) or the brain itself (encephalitis).

These ‘second-stage’ symptoms can include:

• changes in mental state, such as confusion, drowsiness or disorientation
• seizures (fits)
• sensitivity to bright light (photophobia)
• an inability to speak
• paralysis (inability to move certain body parts)

If TBE reaches this stage, you will usually need to be admitted to hospital. These symptoms tend to get slowly better over a few weeks, but it may take several months or years to make a full recovery and there is a risk you could experience long-term complications (see below).

Around one in every 100 cases of TBE is fatal.

Read more about the symptoms of tick-borne encephalitis.

When to seek medical help

If you have returned from a part of the world known to have cases of TBE and you begin to experience flu-like symptoms, you should contact your GP for advice.

You should seek medical advice as soon as possible if you have been bitten by a tick in a risk area (see below) and you haven’t been vaccinated against TBE, or if you develop a rash or fever after being bitten.

The advanced stages of TBE need emergency treatment in hospital. Call 999 (or the equivalent number where you are staying) immediately and ask for an ambulance if you have flu-like symptoms that are getting rapidly worse and are affecting your mental state.

Risk areas

Ticks that spread the TBE virus are not found in the UK. They are mainly found in rural areas of central, northern and eastern Europe.

There are also two sub-types of TBE found in eastern Russia and in some countries in East Asia, particularly forested regions of China and Japan.

See the Tick Alert and National Travel Health Network and Centre (NaTHNaC) websites for maps showing the areas where infected ticks are found.

How the infection is spread

Ticks live in forests, woods, grasslands, riverside meadows, marshes, brushwood and scrublands. They usually live in the undergrowth, where they can easily get onto the clothes or skin of passers-by.

You can become infected with TBE if you are bitten by an infected tick. The virus is present in the tick’s saliva, which also contains a natural anaesthetic so you may not notice you have been bitten.

You can be bitten by an infected tick at any time of year, but tick activity is at its highest during the Spring and early Summer. 

Rarely, eating and drinking unpasteurised milk and dairy products from infected animals, especially goats, can expose you to the TBE virus.

How common is tick-borne encephalitis?

There have been very few cases of TBE reported in the UK, with only around 12 cases diagnosed between 2011 and 2013.

However, the condition is relatively common in areas where infected ticks are found, so it’s important to take steps to reduce your risk of infection (see below).

The World Health Organization estimates that between 10,000 and 12,000 cases of TBE are reported worldwide each year, although the actual number of cases is believed to be much higher than this because it is likely many cases are not reported.

Preventing tick-borne encephalitis

The best way to prevent TBE is to be vaccinated against the infection before you travel if you are planning to work or travel in a part of the world where there is a risk of TBE, particularly if you are planning to visit rural areas or go hiking or camping.

The vaccine, which is only available privately, provides protection against TBE in around nine out of every 10 people who receive it.

Even if you have been vaccinated, you should still take precautions to reduce your risk of being bitten by an infected tick, such as:

• wearing long-sleeved tops and trousers tucked into your socks
• applying insect repellent containing DEET to exposed skin
• checking your body for ticks regularly – common places to find them are the hair line, behind the ears, the elbows, backs of the knees, the groin and the armpits

Read more about preventing tick-borne encephalitis.

How tick-borne encephalitis is treated

If a doctor thinks you may have TBE, they will perform a blood test or lumbar puncture (where a sample of spinal fluid is removed) to confirm whether you are infected.

There is currently no cure for TBE, so treatment aims to help relieve symptoms until the infection passes.

If you only experience the initial symptoms of TBE, no treatment is required other than taking painkillers such as ibuprofen or paracetamol to help relieve your symptoms.

If you develop second-stage symptoms, you will usually be admitted to hospital. Hospital treatment involves providing supportive treatments such as fluids into a vein (intravenous fluids), help with breathing and nursing care. 

Read more about treating viral meningitis and treating encephalitis.

Possible complications

If you develop second-stage symptoms caused by the infection spreading to the brain, there is a risk you could experience long-term (and possibly permanent) complications, such as:

• memory problems
• problems with concentration and a short attention span
• changes in behaviour, such as becoming more impulsive and having poor judgement

These sort of long-term effects occur in more than one in 10 people who develop symptoms of TBE.

Read more about the complications of tick-borne encephalitis.

You can reduce your risk of tick-borne encephalitis (TBE) by getting vaccinated and by taking precautions to avoid tick bites when in risk areas.

TBE vaccination

Vaccination against TBE is recommended for anyone who may be at risk of TBE through their work or travels. It provides protection for more than nine out of every 10 people who have it.

The vaccination is not available on the NHS, so you will need to pay for it privately. The cost of the vaccination course can vary, but it is usually around £50-70 per dose.

The vaccination is given as an injection and requires a course of three doses for full protection. The second dose is given one to three months after the first, and a third dose is given five to 12 months after the second.

If necessary, the course can be accelerated, with the first and second doses given two weeks apart. This shorter course offers rapid short-term protection for at least nine in every 10 people who have it. If you have this accelerated schedule, you should have the third dose five to 12 months after the second as usual if you continue to be at risk.

Booster doses are recommended every three years if you continue to be at risk.

Side effects and precautions

Any reactions to the TBE vaccination are usually mild and do not last long, such as temporary swelling, redness and pain at the site of the injection. You may also experience a high temperature (fever) for a day or two after the first dose.

Most people can have the TBE vaccination safely, but you should tell the doctor or nurse before being vaccinated if:

• you have a fever
• you have a condition, or are receiving treatment, that affects your immune system
• you have a condition affecting your brain or central nervous system
• you are pregnant or breastfeeding

In these circumstances you may still be able to have the vaccine, but your doctor or nurse will need to check your risk with a travel medicine specialist before giving it to you.

You should not have the vaccine if you have had an allergic reaction to eggs (as the vaccine contains egg protein) or any of the other vaccine components in the past.

Read more about the TBE vaccine.

Preventing tick bites

Even if you have been vaccinated, it is still important to take steps to reduce your risk of being bitten by a tick as the vaccine is not 100% effective. Tick bites can also spread other illnesses, such as lyme disease.

The best way to reduce your risk of TBE is to avoid tick bites as much as possible when in risk areas:

• Wear long-sleeved tops and long trousers tucked into your socks. You can also treat your clothes with insecticides such as permethrin.
• Wear light-coloured clothes so ticks are easier to spot and brush off.
• Apply insect repellent containing DEET to exposed skin.
• Check your body for ticks regularly – common places to find them are the hair line, behind the ears, in the elbows, the backs of the knees, the groin and the armpits.

There is also a risk of being infected if you drink milk or eat dairy products from an infected animal, so you should avoid eating and drinking all unpasteurised milk and dairy products in countries where there is a high risk of TBE.

What to do if you find a tick

After a tick has attached itself to you, it may not start feeding for several hours. Adult ticks, once they have fed, can be up to the size of a coffee bean, but tick larvae can be tiny.

If you find a tick on your body, remove it as quickly as possible:

• Use tweezers or a tick remover and wear gloves or cover your fingers with tissue to avoid touching the tick.
• Grab the tick as close to the skin as you can, and gently pull straight up until all parts are removed.
• Do not twist or jerk the tick as you are removing it because this may cause the mouthparts to break off and remain in your skin once the tick has been removed.
• Avoid squeezing the body of the tick and the contents of its stomach into the site of your bite.

After the tick has been removed, wash your hands with soap and water and clean the tick bite with soap and water or an antiseptic – such as an iodine scrub.

You should seek medical advice as soon as possible if you have been bitten by a tick in a TBE risk area and you haven’t been vaccinated against TBE, or if you develop a rash or fever after being bitten.

Around two in every three people infected with tick-borne encephalitis (TBE) virus don’t develop any symptoms, but if you do develop symptoms they can be very serious.

In most cases, the symptoms of TBE develop in two distinct stages.

First stage

The initial symptoms of TBE usually develop at some point between two and 28 days after being bitten by an infected tick. These symptoms can include:

• a high temperature (fever)
• a headache
• tiredness
• muscle pain
• feeling sick

These initial symptoms usually last for one to eight days, after which point most people will make a full recovery.

However, after a period of up to three weeks without any symptoms, some people will go on to develop more serious problems.

Second stage

In the second phase of the disease, the virus starts to affect your central nervous system (brain and spinal cord), which can cause:

• meningitis – inflammation of the membranes surrounding the brain and spinal cord
• encephalitis – inflammation of the brain

Symptoms of meningitis and encephalitis include:

• a sudden fever
• nausea and vomiting
• a stiff neck
• a headache
• changes in mental state, such as confusion
  drowsiness or disorientation
• seizures (fits)
• sensitivity to bright light (photophobia)
• inability to speak
• changes in personality and behaviour
• paralysis (inability to move certain body parts)

If TBE reaches this stage, you will need to be admitted to hospital. These symptoms usually get slowly better over a few weeks, but it may take several months or years to make a full recovery and more than one in 10 people develop long-term problems.

Around one in every 100 people who develops symptoms of TBE will die as a result of the condition.

Read more about the complications of tick-borne encephalitis.

When to seek medical advice

If you have returned from a part of the world known to have cases of TBE and you begin to experience flu-like symptoms you should contact your GP for advice.

You should seek medical advice as soon as possible if you have been bitten by a tick in a TBE risk area and you haven’t been vaccinated against TBE, or if you develop a rash or fever after being bitten.

The advanced stages of TBE need emergency treatment in hospital. Call 999 (or the equivalent number where you are staying) immediately and ask for an ambulance if you have flu-like symptoms that are getting rapidly worse and are affecting your mental state.

Read more about diagnosing tick-borne encephalitis and treating tick-borne encephalitis.