Missed Lyme Disease Was Hiding Behind Her Headache
Lyme Science Blog
Jul 29

Missed Lyme Disease Was Hiding Behind Her Headache

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When Headaches Hide Missed Lyme Disease

In my practice, I’ve seen patients suffer for months—sometimes years—with headaches that don’t respond to migraine treatments.

They’re told it’s hormonal. Or due to stress or lack of sleep. In some cases, however, the deeper issue is missed Lyme disease—especially when the symptoms extend beyond the head.

Missed Lyme disease can present with chronic, migraine-like headaches that don’t follow the usual rules—and don’t get better with the usual care.

When a patient comes in with intractable headaches, brain fog, light sensitivity, and fatigue, it’s time to ask: Is this really migraine? Or something more?

My Patient with Missed Lyme Disease—and a Daily Headache

One of my patients came to me after years of being told she just had migraines.

She was in her 30s—previously healthy—and now struggling with daily, unrelenting headaches. Over time, the pain became harder to describe: sometimes throbbing, sometimes a deep pressure at the base of her skull. Light and sound made it worse. She had trouble concentrating. Her words came slowly. She was exhausted all the time.

She had tried multiple migraine medications—triptans, preventives, even Botox—with no lasting relief. She was told it might be hormonal, or medication overuse, or maybe she wasn’t sleeping enough.

But something didn’t fit.

Just as some headaches turn out to have an underlying cause, not all migraines are truly primary.

In her case, it was missed Lyme disease. And once we treated the infection, her headaches began to fade—along with the brain fog, the fatigue and the sense that something was very wrong and no one was listening.


When the Headaches Doesn’t Behave Like A Migraine

In my experience, headaches due to Lyme disease are often:

  1. Throbbing or pressure-like
  2. Behind the eyes, occipital, or involving the temporal lobes
  3. Centered in the forehead, described more as pressure than pain in some patients
  4. Associated with light/sound sensitivity, nausea, and cognitive dysfunction
  5. Worse with physical or mental exertion
  6. Accompanied by other systemic symptoms like fatigue, sweats, dizziness, and memory loss

While some patients describe sharp or throbbing pain, others experience more of a tight, heavy, or squeezing sensation—especially in the forehead. This can be mistaken for sinus pressure or tension-type headache, delaying recognition of an underlying infection.

These headaches often don’t improve with traditional migraine protocols—and may even flare during antibiotic treatment (a Herxheimer reaction many clinicians overlook).


When Co-Infections or Inflammation Are Driving the Symptoms

Co-infections and tick-borne inflammation can contribute to more severe or persistent headaches, particularly when standard treatments fail. Patients may experience:

  • Increased sensitivity to light, sound, or exertion
  • Headaches linked with air hunger, dizziness, or sleep disturbances
  • Worsening of cognitive symptoms, mood changes, or pressure sensations
  • Headaches that persist despite migraine therapies or recur with flares

Neuroinflammation, autonomic dysfunction, and immune activation may all play a role—especially in patients with overlapping symptoms like fatigue, brain fog, or sensory sensitivity.


Why Missed Lyme Disease Is Common in Headache Patients

Missed Lyme disease is often overlooked because diagnostic tests can be negative—especially early in infection or in late-stage cases.

Patients are told their labs are normal, even as their symptoms worsen.

Lyme disease remains a clinical diagnosis, based on exposure history, symptom patterns, and response to treatment—not just serology.

If the patient also reports brain fog, migratory joint pain, mood swings, or autonomic symptoms like POTS, there may be more going on than migraine.

Don’t let a single label close the door on a broader workup.


Bottom Line: When a Migraine Isn’t Acting Like a Migraine, Think Missed Lyme Disease

When the headache doesn’t behave like a classic migraine—or when neurologic symptoms persist despite treatment—consider missed Lyme disease or a tick-borne co-infection.

Patients deserve more than reassurance. They deserve an explanation—and a plan that works.


Related Articles:

  1. Study shows doctors can misdiagnose Lyme disease
  2. Lyme disease misdiagnosed as Long COVID

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