Lyme Disease Without a Positive Test: A Delayed Diagnosis Case
Persistent symptoms were dismissed for years
Negative testing delayed consideration of Lyme disease
Treatment for Lyme and Babesia led to significant improvement
My patient took a “bury-your-head-in-the-sand” approach toward Lyme disease, which ultimately delayed treatment and prolonged his suffering.
He had been ill for more than 2 years, suffering from severe fatigue, brain fog, poor sleep, headaches, poor concentration, irritability, neck pain, chest pain, palpitations, stomach pains, and joint pain.
He remained ill despite having been evaluated by several specialists to rule out other illnesses.
He was reluctant to consider Lyme disease or tick-borne infection without a positive test.
His condition significantly affected his quality of life, and he experienced increasing frustration as each specialist he consulted was unable to identify the cause of his symptoms. Despite his worsening condition, he was hesitant to pursue a diagnosis of Lyme disease due to a lack of definitive test results and a belief that Lyme disease was an unlikely diagnosis since he did not have a positive test or a known tick bite.
Why Lyme Disease Can Be Missed
This case reflects a common problem in delayed Lyme disease diagnosis. Patients with persistent symptoms are often evaluated for multiple conditions before Lyme disease or Babesia coinfection is considered.
Negative testing early or late in illness may also complicate the evaluation. As discussed in our Lyme test accuracy guide, Lyme disease testing has important limitations and may not definitively rule out infection in every patient.
Many patients also do not recall a tick bite.
Treatment for Lyme Disease and Babesia Coinfection
His family, concerned about his deteriorating health, encouraged him to reconsider his reluctance and seek treatment for Lyme disease. After much persuasion, he agreed to undergo treatment.
He was successfully treated with doxycycline followed by a combination of Zithromax and Malarone for Lyme disease with Babesia coinfection.
The improvement in his symptoms was remarkable; his fatigue, brain fog, and other symptoms began to resolve.
He is now kicking himself for taking that “bury-your-head-in-the-sand” viewpoint and not considering Lyme disease earlier.
Clinical Takeaway
His experience underscores the importance of considering Lyme disease as a potential diagnosis in patients with persistent, unexplained symptoms, even in the absence of a positive test or known tick bite.
Early recognition and treatment may help prevent prolonged suffering and years of uncertainty.
Clinical judgment remains important when symptoms strongly suggest tick-borne illness despite inconclusive testing.
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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
Even with a positive test and visits to LLMDs there is no guarantee that treatments will work, that the LLMD’s are knowledgeable or simply “costly”, and perhaps one’s genetic makeup does not correspond favorably to the treatment. Many folks know they have TBD but don’t have a LLMD. There is a burgeoning business model online with coaching, supplements, etc all with the qualification that medical treatment and advice is not offered, but folks may be desperate for health and lean into these online protocols, webinars and coaching. There are no guardrails.