She Was Told To Wait. Then Told It Was PTLDS. But Her Lyme Infection Never Left.

A “wait and see” approach can delay recognition of persistent symptoms.
Some patients worsen while clinicians assume the infection is gone.
A second look may uncover missed coinfections or unresolved illness.

A “wait and see” approach in managing Lyme disease can have long-lasting consequences, sometimes resulting in months—or even years—of unnecessary suffering.

In this case, a woman was diagnosed with lingering symptoms after Lyme disease. Initially diagnosed with Lyme disease, she followed every instruction: rest, wait, let the antibiotics work. But months later, her condition was worse, and she was told she would need to learn to live with it.

Clinicians called it post-treatment Lyme disease. I believed her worsening symptoms required a broader evaluation.

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A Familiar Story with a Devastating Twist

She was in her 30s. Healthy, vibrant, newly married. She had a tick bite. She saw her doctor quickly and was prescribed a three-week course of doxycycline.

Then came the advice many Lyme patients hear:

“Let’s wait and see if the symptoms resolve.”

At first, she thought she was improving. But by the second month, things began to unravel—fatigue returned, her joints ached, she struggled to concentrate, and a strange emotional flatness set in.

When she returned to her doctor, the response was dismissive:

“Your Lyme disease was already treated. You’re likely experiencing lingering symptoms after Lyme disease.”

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The Problem with “Wait and See”

The reasoning behind watchful waiting is understandable: avoid overtreatment, allow time for recovery, and let the medication work.

But Lyme disease and associated tick-borne illnesses do not always follow a predictable course.

In her case, “wait and see” became “wait and worsen.”

No one reconsidered the diagnosis. No one evaluated her for coinfections. No one considered whether the initial treatment had failed—or whether another tick-borne infection had been missed.

By the time I saw her, she had been deteriorating for more than six months.

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When “Post-Treatment Lyme Disease” Stops the Investigation

The term post-treatment Lyme disease is often used to describe persistent symptoms after standard Lyme disease treatment.

For some patients, symptoms may reflect immune activation, inflammation, or other post-infectious changes. But in other cases, the explanation may be less clear.

Questions can remain:

• Was the original infection adequately treated?
• Was a coinfection overlooked?
• Could another illness be contributing to symptoms?

Too often, the label itself becomes the endpoint of the evaluation rather than the beginning of a deeper investigation.

Patients are often told lingering symptoms are simply part of recovery, which can make it difficult to recognize when additional evaluation for coinfections or unresolved illness may still be warranted.

Patients experiencing fluctuating symptoms may benefit from reviewing why Lyme symptoms come and go.

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We Took a Second Look

Her symptoms aligned more closely with ongoing tick-borne illness than simple recovery after infection.

She had:

• Relapsing fatigue
• Cognitive dysfunction
• Migrating joint pain
• Air hunger and night sweats

These symptoms raised concern for Babesia, a parasitic coinfection not treated by doxycycline alone.

Her Babesia testing later returned positive. We started combination therapy that included antiparasitic medication, and gradually she began to recover.

Coinfections remain an important consideration in patients with persistent symptoms. Learn more about Lyme disease coinfections.

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A Broader Clinical Question

This case raises a broader question that continues to divide clinicians and researchers:

When symptoms persist after Lyme disease treatment, how often are patients experiencing residual inflammation alone—and how often might there still be an unresolved tick-borne illness?

Some researchers have proposed that lingering bacterial debris or immune activation may contribute to ongoing symptoms. Others remain concerned that persistent infection or untreated coinfections may still explain a subset of cases.

In clinical practice, it is also important to rule out other medical explanations for fatigue, pain, cognitive dysfunction, or neurologic symptoms rather than attributing all persistent illness to Lyme disease alone.

Because early testing may miss infection, some patients also revisit the limitations of Lyme disease testing when symptoms persist despite prior treatment.

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What Patients and Clinicians Should Remember

• Persistent symptoms after Lyme disease deserve thoughtful reassessment.
• Watchful waiting may delay recognition of ongoing illness in some patients.
• Negative testing does not always exclude tick-borne disease.
• Doxycycline alone does not treat every tick-borne infection.
• Other medical conditions should also be carefully considered and ruled out.

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Clinical Perspective

Patients with persistent symptoms after Lyme disease often feel trapped between uncertainty and dismissal.

Careful reassessment—including evaluation for coinfections, alternative diagnoses, and evolving symptom patterns—may help guide management decisions.

Cases like this also reinforce the importance of recognizing persistent Lyme disease mechanisms and the ongoing debate surrounding prolonged symptoms after treatment.

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Bottom Line

Watchful waiting may delay recognition of unresolved illness in some patients.

A diagnosis of lingering Lyme symptoms should not automatically end further investigation—especially when symptoms continue to worsen or evolve.

When symptoms persist after Lyme disease treatment, patients may still benefit from a broader evaluation that includes assessment for coinfections, alternative explanations, and evolving illness patterns.

Sometimes the most important step is simply taking another look.

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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