PTLDS: Four Post-Treatment Lyme Disease Cases

Post-Treatment Lyme Disease Syndrome (PTLDS) affects a subset of Lyme disease patients who continue to experience symptoms after completing antibiotic therapy. In this Inside Lyme case study, I review four patients who developed PTLDS following treatment for early Lyme disease.

Wormser and colleagues first described these four cases in the journal Diagnostic Microbiology and Infectious Disease in 2019.

The authors cited earlier studies supporting shorter antibiotic courses for early Lyme disease. Wormser and colleagues wrote that “convincing data indicate that a 10-day course of oral doxycycline is equally as effective as 15-day or 20-day treatment courses with this antibiotic.”

I am one of many physicians who remain unconvinced. In clinical practice, treatment failures occur whether patients receive a 10-day, 15-day, or 20-day course of doxycycline.

[bctt tweet=”There is no reliable test to prove a persistent infection has cleared. Growing evidence suggests Lyme disease or co-infections may persist in some patients.” username=”DrDanielCameron”]

Wormser and colleagues instead evaluated whether a 14-day course of amoxicillin would be safe and effective for early Lyme disease.

The study included 24 adult patients with an erythema migrans (EM) rash. One-third of the patients had multiple EM lesions. All participants had laboratory evidence of Lyme disease either by culture or by a C6 Lyme enzyme immunoassay.

All 24 patients received a 14-day course of amoxicillin. Two patients received additional antibiotics.

The EM rash resolved in all 24 patients. This result is not unexpected because erythema migrans often resolves even without antibiotic treatment.

None of the patients developed objective complications such as Bell’s palsy, Lyme arthritis, heart block, or meningitis during one year of follow-up.

However, four of the 24 patients continued to experience symptoms and were diagnosed with Post-Treatment Lyme Disease Syndrome (PTLDS).

Wormser and colleagues defined PTLDS as “subjective symptoms attributed to Lyme disease that persisted continuously or intermittently for at least six months following completion of antibiotic treatment.”

The investigators did not describe the specific symptoms or functional impairment experienced by these patients.

Other researchers have reported that patients with PTLDS may suffer from severe fatigue, impaired cognition, chronic pain, and reduced daily functioning.

Common symptoms reported by Lyme disease patients include fatigue, poor sleep, impaired concentration, headaches, lightheadedness, neck pain, joint pain, muscle pain, and paresthesias. Paresthesias refer to numbness, tingling, or a “pins-and-needles” sensation.

Additional complications that may occur in Lyme disease were not discussed in the study. These include Lyme encephalopathy, Lyme neuropathy, Postural Orthostatic Tachycardia Syndrome (POTS), Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS), and neuropsychiatric Lyme disease.

Treatment of Post-Treatment Lyme Disease Syndrome (PTLDS)

Wormser and colleagues did not recommend additional antibiotic treatment for the four patients diagnosed with PTLDS. Instead, the condition was viewed as a syndrome rather than evidence of persistent infection.

However, there is currently no reliable test that proves a persistent infection has been fully cleared.

There is also growing evidence suggesting that Lyme disease or co-infections may persist in some patients.

Some physicians remain reluctant to consider additional antibiotic treatment for patients diagnosed with PTLDS.

In this study, the four patients with PTLDS were not offered additional treatment.

What Can We Learn From These PTLDS Cases?

1. A 14-day course of amoxicillin cleared the erythema migrans rash and prevented objective complications in the 24 patients studied.
2. A 14-day course of amoxicillin did not prevent Post-Treatment Lyme Disease Syndrome (PTLDS) in four patients.
3. It remains unclear whether short antibiotic courses prevent persistent symptoms or other complications of Lyme disease.

Questions Raised by These Cases

1. How effective are 10-day, 14-day, or 20-day antibiotic regimens in preventing long-term symptoms of Lyme disease?
2. What treatment strategies best prevent Post-Treatment Lyme Disease Syndrome?

Treating Tick-Borne Disease

More research is needed to determine the best treatment strategies to prevent PTLDS and other complications of Lyme disease.

Patients need physicians experienced in diagnosing and treating PTLDS and other complex manifestations of tick-borne disease.

In clinical practice, I have observed that some physicians are reluctant to consider the possibility that persistent symptoms following treatment for Lyme disease may reflect an ongoing tick-borne infection or an untreated co-infection. Given the limitations of current diagnostic tests, clinicians should remain open to this possibility while continuing to investigate other potential causes of illness.

Physicians should also have the clinical freedom to treat complex Lyme disease cases without undue interference from insurance companies, medical societies, or regulatory boards.

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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