Lyme Disease During Pregnancy: Navigating Uncertainty and Finding Support

Pregnancy already brings uncertainty
Lyme disease adds more unanswered questions
Patients often face dismissal when they need guidance most

Lyme disease during pregnancy creates challenges that go beyond diagnosis and treatment. Many pregnant patients describe uncertainty about symptoms, concerns about their baby, and difficulty finding clinicians willing to discuss risks openly.

A recent qualitative study examining experiences of patients with Lyme-related diagnoses during pregnancy found recurring themes of dismissal, lack of transparency, fragmented care, and difficulty finding clinicians comfortable managing uncertainty.¹

For many families, the hardest part may not be uncertainty itself. It may be navigating that uncertainty alone.

Why Lyme Disease During Pregnancy Creates So Much Anxiety

Pregnancy naturally increases concerns about risk. Lyme disease adds another layer because evidence regarding maternal outcomes, congenital transmission, and long-term child outcomes remains incomplete.^1-3

The authors note that important questions remain unanswered regarding pregnancy outcomes, fetal risk, and long-term developmental effects. This uncertainty often leaves both physicians and patients uncomfortable.¹

Uncertainty does not automatically mean low risk or high risk. It means more research is needed.

Six Things Patients Said Improved Care

The investigators identified six recurring themes associated with positive physician relationships.¹

• Validation of patient experiences
• Transparency
• Willingness to learn
• Shared decision making
• Empathy
• Continuity of care

These themes repeatedly appeared in interviews with patients navigating Lyme-related diagnoses during pregnancy and parenthood.¹

When Patients Feel Dismissed

One of the strongest findings in the study was not medical—it was relational.

Every participant described experiences of dismissal by healthcare providers. Many reported being told symptoms were stress-related, exaggerated, or unrelated to Lyme disease. Participants described feeling unheard, especially when symptoms persisted despite treatment.¹

This matters because delayed recognition and fragmented care can increase anxiety during pregnancy, particularly when symptoms remain unexplained.

What Clinicians Can Learn from Prognostic Uncertainty

Pregnancy care often requires balancing incomplete evidence with patient concerns.

The study suggests physicians do not necessarily need perfect answers. Patients valued clinicians who acknowledged uncertainty, reviewed available evidence, and remained engaged in decision making.¹

Patients frequently reported that simply being listened to changed their experience.

Why This Matters Beyond Pregnancy

The findings may extend beyond Lyme disease during pregnancy.

Patients with persistent symptoms, PTLDS, autonomic dysfunction, and other infection-associated chronic illnesses often describe similar barriers: uncertainty, fragmented care, and medical dismissal.

Improving communication may not solve every unanswered question—but it may reduce avoidable harm.

What We Still Do Not Know About Lyme Disease During Pregnancy

Several unanswered questions remain regarding maternal-fetal transmission, pregnancy outcomes, and long-term developmental effects.^1-3

Existing studies remain limited by sample size, retrospective design, and inconsistent diagnostic definitions. These limitations contribute to continued uncertainty in both clinical practice and research.^2,3

Clinical Perspective

Patients facing uncertainty during pregnancy often need more support—not less.

When evidence is incomplete, clinicians may need to rely more heavily on careful history-taking, shared decision making, and close follow-up.

Clinical Takeaway

Lyme disease during pregnancy remains an area with important unanswered questions.

When evidence is incomplete, validation, transparency, and continuity of care become even more important.

Patients facing uncertainty should not also have to face dismissal.

Related Articles

You may also find these articles helpful:

• Pediatric Lyme Disease
• Post-Treatment Lyme Disease Syndrome
• Delayed Lyme Disease Diagnosis
• Persistent Lyme Disease
• Lyme Disease Symptoms Guide

References

• Hickman ET, Williams ME, DeBiasi RL, Mulkey SB. Promoting a Positive Relationship Between Physicians and Patients with Lyme Disease During Pregnancy and Parenthood. Pathogens. 2026;15(4):419.
• Waddell LA, Greig J, Lindsay LR, Hinckley AF, Ogden NH. A systematic review on the impact of gestational Lyme disease in humans on the fetus and newborn. PLoS One. 2018;13:e0207067.
• Leavey K, MacKenzie RK, Faber S, et al. Lyme borreliosis in pregnancy and associations with parent and offspring health outcomes. Front Med. 2022;9:1022766.

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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