Lyme Science Blog
Jun 11

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

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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 Post-Treatment Lyme Disease Syndrome (PTLDS). Initially, diagnosed with Lyme disease, she followed every instruction: rest, wait, let the antibiotics work. But months later, her condition was even worse, and she was told she had to learn to live with it.

Clinicians called it PTLDS. I call it something else: untreated infection.


🧍‍♀️ A Familiar Story with a Devastating Twist

She was in her 30’s. 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 couldn’t concentrate, and a strange kind of emotional flatness set in. When she went back to her doctor, the response was dismissive.

“Your Lyme was already treated. You’re likely experiencing PTLDS.”


The Flawed Logic of Watchful Waiting

The idea behind watchful waiting is simple: avoid overtreatment, give the body time, let the medication do its job.

But Lyme disease doesn’t always behave that way.

In her case, “wait and see” turned into “wait and suffer.”

No one re-tested. No one checked for co-infections. No one considered that the initial treatment might have failed—or that the infection had never fully cleared.

By the time I saw her, she had been living with worsening symptoms for over six months.


🧬 The Problem with PTLDS as a Default Diagnosis

Post-Treatment Lyme Disease Syndrome is often used as a final stop.
It says: You were treated. The bacteria is gone. Your lingering symptoms are not infectious.

But what if the infection wasn’t gone? What if co-infections like Babesia or Bartonella were missed? What if the treatment was inadequate from the start?

Too often, PTLDS becomes a label used to dismiss rather than investigate. And for this patient, it almost did.


🔬 We Took a Second Look—And Found More

Her symptoms aligned more closely with ongoing infection than post-infectious syndrome. She had:

  1. Relapsing fatigue
  2. Cognitive dysfunction
  3. Migrating joint pain
  4. Air hunger and night sweats

These weren’t random symptoms—they were hallmarks of Babesia, a parasitic co-infection that doxycycline alone does not treat.

Her Babesia test came back positive. We started combination therapy that included antiparasitic medication, and slowly—she began to recover.


💊 The Turnaround That Could’ve Happened Sooner

She didn’t need to be told to “wait.” She didn’t need to be dismissed with a label that shut down further inquiry.

What she needed was:

  1. A broader differential diagnosis
  2. An evaluation for co-infections
  3. A willingness to treat based on clinical judgment, not just rigid guidelines

What Patients and Providers Need to Know

  1. PTLDS is a real label—but it’s not always the right one.
  2. Watchful waiting can delay treatment for persistent infections.
  3. Negative tests don’t always mean no infection.
  4. Doxycycline doesn’t treat everything—especially Babesia or Bartonella.

Bottom Line

Watchful waiting delayed her recovery. A PTLDS label almost kept her from healing.
When Lyme disease persists, the answer isn’t to give up—it’s to look deeper.

If you’re still sick, don’t settle for a label. You deserve answers. And sometimes, you deserve another look.


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