Late Lyme Disease

Lyme disease, also known as Lyme borreliosis, is caused by an infection with the bacteria Borrelia burgdorferi. This bacteria is disseminated through tick bites. Infected ticks usually bite small mammals, who do not develop any kind of infection from the bacteria. When humans are exposed to B. Burgdorferi from a tick bite, however, they can develop Lyme disease. 1

People who work outside or spend time in woodland areas, where there is greater potential for exposure to tick bites, are most at risk of infection.

Lyme disease is a condition which progresses in stages:

1. A person will initially develop early localized lyme disease, in which the bacteria have not yet spread through the body. At this stage, which generally has its onset days or weeks after the tick bite, a person’s symptoms will usually include a fever, fatigue, and a rash, called the Erythema Migrans rash, 2 which has a distinctive bulls’ eye shape and affects around two thirds of people who develop Lyme disease. See this resource for more information on symptoms and treatment of early localized Lyme disease.
2. If early localized Lyme disease is not successfully treated with antibiotics, such as doxycycline, in time, it will develop into early disseminated Lyme disease, spreading to other areas of the body. If this occurs, other oral or intravenous antibiotics will be needed; oral antibiotics will be used in cases which are considered less severe. See this resource for more information on symptoms and treatment of early disseminated Lyme disease.
3. If Lyme disease is not diagnosed in either of these early stages, and is not treated effectively with antibiotics, 3 the bacteria that cause LD can spread throughout the body from the site of the tick bite, resulting in late disseminated Lyme disease, or late lyme disease. The onset of symptoms and complications of late disseminated Lyme disease is usually around 6-36 months after the original infection.

Good to know: People affected by late lyme disease may develop other subtypes of late lyme disease, such as post-treatment Lyme disease syndrome (PTLDS) or chronic Lyme disease.

Symptoms of late Lyme disease may include joint pain (arthritis), skin changes, musculoskeletal or neurologic complications. Like the less severe forms of Lyme disease, late Lyme disease can be treated with antibiotics, although medical opinions differ about the appropriate length of an antibiotic treatment course. 3 Regardless, most people recover well, although some symptoms associated with late Lyme disease, such as fatigue, may persist for some time following treatment.

People experiencing possible symptoms of late Lyme disease can use the free Ada app to carry out a symptom assessment.

Lyme disease is caused by bacteria called Borrelia Burgdorferi. These bacteria are spread through tick bites from infected black-legged ticks. A person’s risk of contracting Lyme disease, and, by extension, late Lyme disease, is increased by spending time outdoors in wooded areas where there is greater risk of exposure to these bacteria from ticks, and/or by living with domestic animals such as cats and dogs who may bring ticks infected with B. Burgdorferi into the home.

No type of Lyme disease can be passed from person to person, so there is no risk of infection between humans.

Although anyone can develop Lyme disease, it tends to be slightly more common in children and older adults. It is possible to minimise the risk of infection from Lyme disease in all people by checking the body for ticks, particularly after spending time in woodland areas or heaths. To remove a tick: 4

• Use a pair of fine-tipped tweezers to grasp the tick where it meets the skin’s surface.
• Pull the tick upwards steadily, without twisting or jerking it.
• Try to remove the whole tick at once, including the mouth parts. If the mouth parts of the tick break off when the body of the tick is removed, remove them separately.
• Clean the skin thoroughly with soap and water or rubbing alcohol after the tick is entirely removed.
• Dispose of the tick without crushing it between the fingers, as this can result in contracting Lyme disease.

Treating Lyme disease promptly with antibiotics, as soon after showing symptoms following a bite from an infected tick as possible, can help to reduce the likelihood of developing late disseminated Lyme disease.

Late Lyme disease usually develops 6-36 months after a person first receives the causal infectious tick bite.

The symptoms of late Lyme disease differ from the earlier stages. In North America, joint pain and swelling is very common. In Europe, skin changes are more common. These skin changes consist of swelling, redness and thinning of the skin on usually one hand or one foot. Other symptoms of LLD may include arthritis, weakness of the facial muscles, heart palpitations and aching muscles.

Although some people may develop neurologic problems, these are rare, but may include:

• Lack of stamina and fatigue
• Tingling and numbness in the hands and feet
• Confusion
• Memory problems
• Difficulty concentrating
• Headaches

When a person develops neurologic complications from late Lyme disease, these may result in a diagnosis of chronic neurologic Lyme disease or neuropsychiatric Lyme disease, depending on the nature of the complications that they experience:

• Symptoms of chronic neurologic Lyme disease may include: chronic encephalopathy (cognitive inefficiency), polyneuropathy, or leukoencephalitis.
• Symptoms of neuropsychiatric Lyme disease may include: myelitis (inflammation of the spinal cord), meningitis (inflammation of the brain’s enveloping membrane), cranial neuritis (inflammation of the cranial nerves), painful radiculitis (inflammation of the nerve roots), encephalopathy, encephalitis (inflammation within the brain) and/or encephalomyelitis (inflammation of the brain and spinal cord).

Both chronic neurologic Lyme disease and neuropsychiatric Lyme disease can be treated with antibiotics. The type, dosage and course of antibiotics used will depend on the specific needs of the person affected, and the symptoms they are experiencing.

People experiencing possible symptoms of late Lyme disease can use the free Ada app to carry out a symptom assessment.

In post-treatment Lyme disease syndrome (PTLDS), certain symptoms of Lyme disease return, weeks, months or even years after early (localized or disseminated) or late Lyme disease has been treated. PTLDS is sometimes also called chronic Lyme disease, although, somewhat confusingly, the term chronic lyme disease can also be interchangeably applied to persistent cases of late Lyme disease.

The key difference between PTLDS and late Lyme disease is that, in cases of PTLDS, there is no detectable active infection within the body, despite the presence of symptoms.

Many symptoms of PTLDS are similar to those of late Lyme disease, and include: 5

• Fatigue
• Numbness and joint pain (arthritis)
• Neurologic difficulties such as impaired memory and concentration
• Depression
• Widespread musculoskeletal pain

People with PTLDS often report that their symptoms lessen and intensify over time. 5 A tailored treatment approach is needed to address the specific symptoms of PTLDS that a person experiences, on a case-by-case basis.

The diagnosis of late-stage Lyme disease can be very difficult, and is usually made by a specialist in infectious diseases. The diagnosis can be confirmed if the affected person has had the characteristic 'bull's eye' rash and has lived or worked in areas where ticks are present, or with a blood test.

Treatment for late Lyme disease is different from treatment for early Lyme disease. When the condition is in its early stages, e.g. when the Erythema Migrans rash is present, a short course of antibiotics may be sufficient to stop the bacterial infection spreading to other parts of the body.

Late Lyme disease often requires antibiotic treatment over a period of up to 28 days. Sometimes these antibiotics must be administered intravenously (through a drip).

Avoiding tick bites by using insect repellents and protective clothing is important to prevent this condition, especially in areas which are known to have Lyme disease. There is no vaccination available.

• Late Lyme disease
• Late Lyme borreliosis
• Stage 3 Lyme borreliosis
• Arthritic borreliosis