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:
- Relapsing fatigue
- Cognitive dysfunction
- Migrating joint pain
- 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:
- A broader differential diagnosis
- An evaluation for co-infections
- A willingness to treat based on clinical judgment, not just rigid guidelines
❗ What Patients and Providers Need to Know
- PTLDS is a real label—but it’s not always the right one.
- Watchful waiting can delay treatment for persistent infections.
- Negative tests don’t always mean no infection.
- 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.
Thank you.
I fauggt drs through heatstroke then coma for 5 days then 7 days later I went paralyzed from gbs. Found lyme 5 months after. Ivig for several weeks no therapy given a choice between a nursing home or discharge. At 47 I took a crappy walker and dragged myself out if hospital. Now im coming up on 3 years since I was found unresponsive. Then had gallbladder taken last year. Not obe doctor has said how can we get you well. Its been a battle just to get them to talk to me. Spend 16 months pain management and neurologist only to have the doctor call me a drug addict? I came off every med my self and never looked back. Im too scared to return after being committed last summer. My brain has been attacked constantly.
I feel like im not good enough for anyone to care if im well or not.
Im trying myself but u cant even make money last past a week.
Went from 120k a year to 25lk spend 2 years with put any income.
Thought you should know a little more. Im tired of fighting everyone. I want a chance to sell cars again and regain my independent reputation.
Thank you again
I’m very sorry you’ve carried so much. No one should feel dismissed while trying to recover. If you’re feeling overwhelmed, reach out to someone local for support.