What is the prognosis for people with Lyme disease?

How long will it take to get better from Lyme disease?

• Symptoms of Lyme disease may persist for several weeks
• If patients are gradually getting better they may not need further treatment
• If symptoms are persisting and getting worse the doctor may refer patients to an infectious diseases specialist

NICE Guidelines 2018 [66]:
Information for people with Lyme:
1. Explain to people with Lyme disease that:

• Lyme disease is a bacterial infection treated with antibiotics
• Most people recover completely
• Prompt antibiotic treatment reduces the risk of further symptoms developing and increases the chance of complete recovery
• It may take time to get better, but their symptoms should continue to improve in the months after antibiotic treatment
• They may need additional treatment for symptom relief.

2. Tell people who are starting antibiotics for Lyme disease that some people may have a Jarisch–Herxheimer reaction to treatment. Explain that:

• This causes a worsening of symptoms early in treatment
• It can happen when large numbers of bacteria in the body are killed
• It does not happen to everyone treated for Lyme disease
• They should contact their doctor and keep taking their antibiotics if their symptoms worsen.

3. Advise people with Lyme disease to talk to their doctor if their symptoms have not improved or if symptoms return after completing treatment.
4. Explain to people with Lyme disease that infection does not give them lifelong immunity and that it is possible for them to be re-infected and develop Lyme disease again

Post-Lyme disease syndrome

Will I have a full recovery from my Lyme disease symptoms? Most people make a full recovery from Lyme disease, however a few people with Lyme disease go on to develop long-term symptoms similar to fibromyalgia or chronic fatigue syndrome. This is known as post-infectious Lyme disease. It is likely to be due to overactivity of the immune system rather than persistent infection.

Post-Lyme disease syndrome occurs when patients have received prior adequate antimicrobial treatment for Lyme disease and still experience subsequent symptoms [68]. This syndrome occurs in a minority (< 5%) of cases. Persistent subjective symptoms include fatigue, musculoskeletal pain and neurocognitive features. It can resemble chronic fatigue or fibromyalgia-like illness.
Post-Lyme disease syndrome is a problem characterised by patients with ongoing, recurrent or persistent symptoms for more than six months after appropriate treatment of a proven manifestation of Lyme borreliosis [78]. It is essential that such patients undergo thorough clinical and laboratory assessment to exclude the possibility of treatment failure or the presence of a new condition.
Post Lyme disease syndrome is sometimes equated with persistent B. burdorferi s.l. and referred to as chronic Lyme disease but this is a misnomer and Post Lyme disease syndrome does not warrant the use of expensive and potentially dangerous antibiotics.

Chronic Lyme disease

The term “chronic Lyme disease” has been used by some people to describe persistent symptoms such as tiredness, aches and pains, usually in the absence of a confirmed diagnosis of Lyme disease. It is different from “Post Lyme disease” or “Post Lyme syndrome” - the term used to describe persistent Lyme disease symptoms following confirmed diagnosis and treatment of infection [74].

The British Infection Association (BIA) has expressed concern that patients with a wide range of conditions including multiple sclerosis, motor neurone disease and malignancies have received diagnoses of “chronic Lyme disease” without objective clinical or laboratory support [80]. IIn many cases patients have received potentially dangerous treatments, including prolonged courses of antibiotics, antiparasitic and other agents and have lost opportunities for appropriate management of their conditions The BIA recommends that patients presenting with symptoms and history not typical of Lyme borreliosis should be investigated according to good medical practice, and that investigation for Lyme borreliosis should be performed only if there are good clinical and epidemiological indicators.