Delayed Lyme Disease Diagnosis: Lessons From a German Study

Many patients waited years for diagnosis.
Cognitive symptoms and depression were common.
Relapse after treatment was frequently reported.

Why is Lyme disease often diagnosed late? A German study of 252 Lyme disease patients found lengthy diagnostic delays, frequent cognitive symptoms, depression, reduced quality of life, and high rates of symptom relapse after treatment.

The authors collected data through an online questionnaire completed by 252 Lyme disease patients and 267 healthy controls. Their findings provide insight into the challenges patients may face when Lyme disease is not recognized promptly.

The findings revealed that “Lyme disease can cause diverse psychological and neuropsychiatric symptoms. These include limitations in quality of life, sleep, attention, and memory, as well as depressive symptoms.”

Many patients waited years for a diagnosis

The majority of the patients were diagnosed with Lyme disease based on ELISA (53.2%), Western blot (43.7%), and lymphocyte transformation test results (41.7%).

Out of the 252 participants, nearly half (45.5%) recalled an erythema migrans rash, while 74% recalled a tick bite “that possibly triggered Lyme disease.”

On average, patients visited almost 8 physicians to obtain a diagnosis.

It took approximately 8 years to receive a diagnosis following the tick bite. Less than half (46%) received their diagnosis within the first 5 years after the onset of symptoms.

These findings mirror concerns discussed in our review of Lyme disease misdiagnosis.

Cognitive symptoms and depression were common

The authors found significant effects on quality of life, sleep, attention, memory, and mood.

The findings support growing interest in the relationship between Lyme disease, brain fog, and neuropsychiatric symptoms.

“It appears that people suffering from Lyme disease have significantly lower quality of life and sleep and show cognitive impairments when it comes to attention and memory.”

The authors also reported that Lyme disease patients tended to experience depressive symptoms more often than healthy controls.

Co-infections were frequently reported

The majority of participants were not diagnosed with or tested for co-infections.

“A total of 25% of the sample stated that they had (exactly one) co-infection,” the authors explain, while 15% reported having two co-infections.

For patients who reported co-infections, Chlamydia infection was particularly common (34.9%), as was Epstein–Barr virus (34.9%).

Many patients improved but relapse was common

Out of the 252 participants, 168 received antibiotic treatment that lasted at least 3 weeks.

Symptoms improved for nearly 73% of these patients.

Many patients reported symptom relapse after treatment

Ninety-three percent of participants reported a relapse of symptoms after completing antibiotic therapy.

“The type of treatment was oral in most cases (47.6%), or a combination of oral and intravenous therapy (48.8%),” according to the authors.

Intravenous antibiotic therapy was prescribed in only 3.6% of the cases.

Key findings from the German study

• “It became clear that Lyme disease is often diagnosed very late.”
• “It appears that people suffering from Lyme disease have significantly lower quality of life and sleep and show cognitive impairments when it comes to attention and memory.”
• “This study shows that 3.1% of Lyme patients were satisfied with their lives and that 37% scored in the lower third of the quality-of-life scale.”
• “It was also shown that Lyme patients tend to have depressive symptoms.”

Frequently Asked Questions

How long did Lyme disease diagnosis take in this study?

Patients reported an average delay of approximately 8 years between the suspected tick bite and diagnosis.

Why is Lyme disease sometimes diagnosed late?

Symptoms may be diverse, testing can be challenging, and patients often see multiple physicians before receiving a diagnosis.

Did patients report cognitive symptoms?

Yes. Participants reported problems involving attention, memory, sleep, and quality of life.

Did patients improve with treatment?

Nearly 73% reported improvement, although many also reported symptom relapse after treatment.

What neuropsychiatric symptoms were reported?

Patients reported cognitive difficulties, sleep disturbances, reduced quality of life, and depressive symptoms.

Clinical Takeaway

This German study highlights the burden of delayed Lyme disease diagnosis. Many patients reported years of symptoms before receiving a diagnosis, along with cognitive difficulties, depression, reduced quality of life, and ongoing health challenges.

Earlier recognition of Lyme disease may help reduce prolonged suffering and improve outcomes for patients with compatible symptoms and a history of tick exposure.

Related Articles

Study explores risk of tick bites in German military

Lyme disease: A persistent infection

Long-term problems for some Lyme neuroborreliosis patients

References

1. Hündersen F, Forst S, Kasten E. Neuropsychiatric and Psychological Symptoms in Patients with Lyme Disease: A Study of 252 Patients. Healthcare (Basel). 2021;9(6):733.

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Dr. Daniel Cameron, MD, MPH
Lyme disease clinician with over 30 years of experience and past president of ILADS.

Symptoms • Testing • Coinfections • Recovery • Pediatric • Prevention