Is chronic Lyme disease a form of mental illness?

March 18, 2024
Avatar for Jyoti Kinghorn, PhDJyoti Kinghorn, PhD
Lyme disease and mental health

Chronic Lyme disease can directly or indirectly cause mental health issues. However, Lyme disease in itself is not a form of mental illness. It is a bacterial infection that people get through tick bites.

What is Lyme disease?

Lyme disease is an infection that humans get from tick bites. When a tick infected with the pathogen Borrelia burgdorferi bites a human, the pathogen can pass to the human and cause Lyme disease. The CDC estimates that about 476,000 people in the U.S. get Lyme disease every year.

Many of the cases are from the northeastern U.S. states from Virginia to Maine, the northwest, and north-central states of Wisconsin and Minnesota. Ticks are prevalent in woody and grassy areas. They cannot fly but they can climb up the plants to jump on animals or people hiking nearby brushing against the vegetation. Most tick bites happen in the summer and fall.

Symptoms and treatment

Lyme disease symptoms usually show up within 3-30 days after getting bit by an infected tick.

The most characteristic symptom of Lyme disease is a rash called erythema migrans. It is a rash that starts small but can expand to over 12 inches and can have a classic “bullseye” appearance of a darker center with a ring around it. The rash is seen in 70-80% of infected tick bites.

Other symptoms include fever, headache, and fatigue.

A 2-4 week course of antibiotics can usually remove the infection, especially when it is taken early when the rash starts to form.

If Lyme disease is left untreated, it can result in chronic Lyme disease.

What is chronic Lyme disease?

Chronic Lyme can happen because of delayed treatment when the patient does not initially seek medical care, possibly because they miss the signs of Lyme disease.

Some people also suffer the effects of chronic Lyme disease even though they receive timely antibiotic treatment. This happens in about 5-30% of people who receive the standard 2-4 week course of antibiotics for Lyme disease. This condition where someone is not fully better 6 months or longer after the antibiotic treatment is called posttreatment Lyme disease syndrome (PTLDS), or posttreatment Lyme disease (PTLD).

Chronic Lyme and PTLDS can affect the joints, heart, nervous system, and brain. It can have long-lasting symptoms such as fatigue, pain, mental fog, depression, and anxiety.

Chronic Lyme disease and mental health

According to a study published in the American Journal of Psychiatry, a single diagnosis of Lyme disease increases a person’s chance of developing a mental health disorder by 24%. Two or more resurgence episodes of Lyme disease increase this risk to 79%. More than 15% of people with long-term Lyme disease report having suicidal thoughts, and 1,200 people suffering from Lyme disease commit suicide every year.

Lyme disease affects mental health in two ways:

1. The pathogen that causes Lyme disease causes mental health issues by directly affecting the nervous system, brain, and spinal cord.

This condition where the Lyme pathogen affects the central nervous system is called neurological Lyme or neuroborreliosis and it occurs in about 15% of Lyme patients who did not receive timely treatment. Early symptoms of neurological Lyme include aseptic meningitis and facial palsy. These are treatable with antibiotics. However, permanent neurological damage can occur without antibiotic treatment.

This is indicated by symptoms such as:

  • Fatigue
  • Pain
  • Insomnia
  • Depression
  • An inability to see vibrations
  • Difficulty in tracking words on a page
  • Hallucinations, such as hearing sounds that are not there. For example, the patient may hear music that isn’t playing.

Lyme-related hallucinations can resemble those from mental health disorders such as schizophrenia, even though the two conditions have different causes and require different treatments.

2. Having Lyme disease indirectly affects mental health.

Chronic Lyme disease can take a toll on the physical and mental health of the patient and can be extremely stressful. The stress of having a disease that never truly gets better, the mental fog and fatigue that make it hard to work or even drive, and the added expenses of medical care that may not lead anywhere can cause feelings of anxiety and depression.

Lyme wars disagreement between doctor and patient

Controversy in treating PTLDS and Lyme wars

Treating PTLDS is a topic of controversy and disagreement between community doctors, professional organizations, patient groups and advocates, and health insurance companies. Patients often feel better with antibiotics, though they can have their symptoms return mid-course. They generally lean towards prolonging antibiotic treatments.

Professional medical organizations are split on prolonged use of antibiotics.

The latest joint IDSA/AAN/ACR guidelines recommend against repeated antibiotic treatment for patients who do not have evidence of treatment failure or reinfections. So, repeated antibiotic treatment will be ordered if symptoms such as arthritis come back which could indicate reinfection or treatment failure, but not for persistent fatigue.

On the other hand, the International Lyme and Associated Diseases Society (ILADS) guidelines state that while patients who have had treatment for Lyme disease yet continue to show symptoms must be evaluated for other disorders or infections before starting another antibiotic course, antibiotics may be given if the patient has an impaired quality of life and Lyme disease is judged to be the possible cause.

Some physicians adhere to the IDSA/AAN/ACR guidelines while others follow the ILADS guidelines.

While individual patients tout the benefits of using IV antibiotics twice a day for a year, scientific reports show that prolonged antibiotics use especially by IV either provides no benefits to the PTLDS patients or potentially causes harm due to coinfections and electrolyte imbalance.

Such conflicting guidelines can be frustrating to patients whose lives have been upended by the sickness.

The new generation of PTLDS therapies

In their review article, scientists Heather Adkison and Monica Embers point out 4 reasons why PLTDS might linger after treatment. These include autoimmune reactions in the body after exposure to the Lyme pathogen, post-infectious immune responses in the body, persistent infection, and antibiotic tolerance by the Lyme pathogen, Borrelia burgdorferi.

They surmise that future PTLDS therapies would explore therapies that address these specific reasons to help patients feel better. For example, the use of immune therapies that neutralize autoimmune reactions, and the development of specific antibiotics and inhibitors that kill Borrelia burgdorferi specifically and more efficiently. Scientists also need to identify specific biomarkers from various stages of the infection that can help with correctly diagnosing patients with chronic Lyme or PTLDS.

The information provided in our blog posts is for informational purposes only and is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this blog.

Leave a comment

Recent Posts