Symptoms of Lyme disease

For some people, symptoms of Lyme disease could include more than just the typical erythema migrans rash, also known as the ‘bull’s eye’ rash (which does not present in every case) and the typical flu-like symptoms. Below you will find the symptoms of Lyme disease as listed according to the CDC (US), NICE (UK), IDSA (US) and ILADS (international) medical organisations.

CDC

According to the Centers for Disease Control and Prevention (CDC) the typical symptoms of Lyme disease in the early stage (3 to 30 days after a tick bite) include:  fever, chills, headache, fatigue and a characteristic skin rash called eryhtema migrans (EM); however, not everyone develops a rash (according to the CDC, 70% to 80% of infected persons develop the EM rash).

If left untreated, the infections can spread to joints, the heart and the nervous system and late signs and symptoms include:

• Severe headaches and neck stiffness

• Additional EM rashes on other areas of the body

• Facial palsy (loss of muscle tone or droop on one or both sides of the face)

• Arthritis with severe joint pain and swelling, particularly the knees and other large joints.

• Intermittent pain in tendons, muscles, joints, and bone

• Heart palpitations or an irregular heart beat

• Episodes of dizziness or shortness of breath

• Inflammation of the brain and spinal cord

• Nerve pain

• Shooting pains, numbness, or tingling in the hands or feet

NICE guidelines

Nice guidelines include the following symptoms as part of Lyme diagnosis:

• Presence of EM rash (to be distinguished from a rash that may develop as a reaction to a tick bite but is not the ‘bull’s eye’ rash)

The following symptoms may be considered, as Lyme disease is a possible but uncommon cause of:

• 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

• Paraesthesia

The following signs and symptoms relating to one or more organ systems may be considered, as Lyme disease is a possible but uncommon cause of:

• Neurological symptoms, such as facial palsy or other unexplained cranial nerve palsies, meningitis, mononeuritis (i.e. inflammation of a single nerve) multiplex radiculopathy (i.e. inflamed or compressed nerve root); or rarely encephalitis (i.e. brain inflammation), neuropsychiatric presentations or unexplained white matter changes on brain imaging

• Inflammatory arthritis affecting 1 or more joints that may be fluctuating and migratory

• Cardiac problems, such as heart block or pericarditis

• Eye symptoms, such as uveitis and keratitis

• Skin rashes such as acrodermatitis chronic atrophicans or lymphocytoma

It is important to highlight that the NICE guidelines suggest that Lyme disease should not be ruled out in people that present with symptoms but have no clear history of tick exposure.

IDSA Society

IDSA (Infectious Diseases Society of America) which is a medical association of healthcare professionals, who specialise in infectious diseases in the US, seem to be stricter in their recommendations for recognising Lyme disease symptoms.  In the 2020 Clinical Practice Guidelines for the Prevention, Diagnosis and Treatment of Lyme disease IDSA recommends the following:

• In patients with potential tick exposure in a Lyme disease endemic area who have 1 or more skin lesions compatible with erythema migrans (‘bull’s eye’) rash, clinical diagnosis rather than laboratory testing is recommended

• The following neurologic presentations may be considered for Lyme disease testing: meningitis, radiculoneuritis, mononeuropathy multiplex, acute cranial neuropathies, evidence of spinal cord (or rarely brain) inflammation, with epidemiologically plausible exposure to ticks infected with Borrelia burgdorferi

IDSA suggests against testing for Lyme disease in patients with typical ALS, relapsing-remitting multiple sclerosis, Parkinson disease, dementia or cognitive decline, or new-onset seizures, or in patients presenting with nonspecific magnetic resonance imagining white matter abnormalities in the absence of a history of other clinical or epidemiologic support for the diagnosis of Lyme disease.

ILADS

ILADS (International Lyme and Associated Diseases Society) is a non-profit, international, multidisciplinary medical society dedicated to the appropriate diagnosis of Lyme and associated disease. ILADS makes the distinction between acute and chronic Lyme disease.

ILADS list the following common symptoms in early Lyme disease:

• EM rash (80% are solid-colored, and less than 20% have a ‘bull’s eye’ appearance)

• Fever

• Headache

• Fatigue

• Muscle and joint pain.

The non-rash symptoms are often described as a “summertime flu.” Some people may notice areas of numbness or tingling.  

Once the infection extends beyond the skin, it can affect any system of the body, causing symptoms including:

• Debilitating fatigue

• Headaches

• Muscle pain

• Arthritis

• Numbness

• Tingling

• Nerve pain and weakness

• Heart problems

• Psychiatric symptoms

• Difficulty with thinking, memory, language and math skills

• Problems with vision and hearing.

Conclusion

As it can be seen the recommendations of diagnosing Lyme disease based on symptoms presentation differ among the top medical societies involved in guidelines and recommendations development. If you suspect Lyme disease, keep a checklist of your symptoms, compare them to all the above recommendations and if you are in the UK access the NICE guidelines here, print a copy and take it with you when visiting your doctor.

(The guidelines presented above are accurate as of December 2020)