Gender bias in Lyme disease
Lyme Science Blog
Sep 02

Gender bias in Lyme disease

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  1. What gender bias in Lyme disease can look like

    She first came to me after two exhausting years of symptoms that refused to show up on routine tests.

    Her knees and shoulders ached unpredictably. Her neck was stiff. The fatigue hit her like a wall every afternoon—“bone-deep,” she called it. Brain fog made it hard to follow conversations. She forgot what her children had told her minutes earlier. She stopped driving at night because headlights disoriented her.

    She had already seen eight providers: a neurologist, two primary care doctors, a rheumatologist, a gynecologist, and a psychologist.

  2. Each one found a way to explain her symptoms—just not accurately.

    “Your labs are normal.”
    “It’s probably perimenopause.”
    “You’re just stressed.”
    “Try an SSRI.”

    No one asked about tick exposure. No one ordered a Western blot. No one considered Babesia or Bartonella. No one screened for infectious or post-infectious causes of autonomic dysfunction.

    That dismissal wasn’t random. It was gendered.


    The Gendered Lens of “Normal” Symptoms

    Women are taught to normalize discomfort — period cramps, childbirth, exhaustion from caretaking. So, when they describe pain, fatigue, or neurological symptoms, the medical system too often downshifts into psychological explanations:

    1. Stress: She must be anxious.

    2. Hormones: It’s probably menopause.

    3. Depression: Let’s try an antidepressant.

    Meanwhile, men with the same complaints are more likely to receive imaging, lab work, and second opinions. Studies show women wait longer for pain medication in ERs and are more often referred to psychiatry when initial labs are negative.

    This isn’t about one doctor — it’s about a system shaped by bias.


    The Double Burden: Sick and dismissed

    She kept working full-time. She parented two children. She pushed through. She wore makeup to appointments. She didn’t complain. She didn’t “look sick.”

    Ironically, that resilience was used against her.

    If you’re still working, how bad can it be?

    Every night, she collapsed onto the couch. She wasn’t just tired — she was terrified she was falling apart. But guilt held her together. Guilt for not making dinner. Guilt for missing soccer games. Guilt for asking for help.

    That’s the trap many women fall into. They are expected to care for everyone else but doubted when they ask for care themselves.


    Finally, Someone Listened

    When she reached my clinic, we started from scratch.

    1. Exposure history? Yes — hiking in the Northeast. A tick bite. No rash. No testing at the time.

    2. Tick-borne panel? ELISA equivocal. Western blot showed IgM bands consistent with Borrelia. Babesia titers were borderline, but symptoms like air hunger, head pressure, and night sweats supported a clinical diagnosis.

    3. Autonomic symptoms? She had already been diagnosed with POTS after reporting palpitations, dizziness, and near-fainting episodes. But no one had informed her that POTS could be associated with Lyme disease or coinfections. The connection had been missed and so had the opportunity to treat the underlying cause.

    Diagnosis: Lyme disease with probable Babesia co-infection, layered over a previously diagnosed autonomic disorder that had not been linked to her infectious history.


    Treatment and Turning Point

    We began treatment:

    1. Doxycycline, atovaquone, azithromycin for Lyme and Babesia

    2. Salt loading, compression, beta blocker for POTS

    3. Supportive care to manage Herxheimer reactions

    She had setbacks. But she also had momentum.

    1. By month two, she could walk her dog again.

    2. By month four, she was cooking dinner most nights.

    3. By month six, she said: “I feel like I’m getting my brain back.”

    She wasn’t just healing. She was reclaiming her story.


    Policy Matters, Too

    1. Research funding skews toward male-dominant conditions; complex diseases like Lyme in women are underfunded.

    2. Disability systems often reject episodic or invisible symptoms, disproportionately affecting women.

    3. Work protections don’t reflect fluctuating illness or caregiving demands.

    4. Insurance policies often deny coverage unless patients meet rigid criteria—criteria that favor male-centric disease models.

    Until policy reflects the realities of women with Lyme disease, delays and denials will continue.


    A Clinician’s Checklist to Dismantle Gender Bias in Lyme disease

    1. Listen before labeling. Don’t default to stress or hormones.

    2. Use gender-aware assessments. Factor in caregiving and part-time work.

    3. Diversify testing. ELISAs miss early Lyme; coinfections require separate panels.

    4. Validate invisible illness. Document functional loss clearly—for disability, employers, and insurers.

    5. Advocate upstream. Support research, training, and policy reforms that reflect women’s real experiences.


    For the Woman Still Searching

    If you’ve been told “everything is normal” – remember: normal labs don’t mean normal life.

    Keep asking questions. Keep tracking your symptoms. Bring someone with you to appointments. You are not making this up. You are not alone.

    You deserve evidence-based answers — not excuses wrapped in gender stereotypes.

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  3. Author’s Note: Details have been combined and anonymized to protect patient privacy while illustrating common patterns I see in clinical practice

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