Lyme: an epidemic of misinformation

Blood-starved ticks are turning your friends and neighbors into achy zombies – but doctors won’t treat them. That’s right. Lyme disease is sweeping the nation, and doctors don’t care.

Fortunately, the Lyme Underground is here to save us, principled radicals with Bic pens and prescription pads who battle to save the myalgic victims of this tick apocalypse. Who better to rectify the greed, pugnacity and unvarnished ignorance of most doctors than these crusading and self-described Lyme “angels?”  

It turns out that Lyme Misinformation Syndrome is about sixteen times more common than Lyme disease itself. In my infectious diseases practice in hard-hit New Hampshire, I see more people who think they have Lyme disease (but don’t) than people who actually have Lyme disease. Seriously.

It’s weird. Most of us fear illness: we hope the diagnosis is “you’re fine.” This isn’t always true with Lyme disease. Some have Lyme disease, and I’m glad to treat them. Still others are glad not to have Lyme disease.


The tough ones can’t be convinced their symptoms are anything other than Lyme disease. Mrs. Burgdorf (not her real name) was a good example. The product of an abusive household, she suffered from a quixotic collection of symptoms. Dogged by chronic headaches, she complained of diarrhea alternating with constipation plus diffuse muscle aches so severe a fingertip’s touch makes her wince. Her memory wasn’t what it used to be. An exhaustive diagnostic work up including physician examination, blood tests and brain scans and colonoscopy were negative, including testing for Lyme disease.

I told her, “I’m not sure what this is, but it’s not Lyme disease.” Mrs. Burgdorf was convinced otherwise. “It has to be Lyme,” she said, “I went online and the symptoms all fit.” Actually the symptomatic shoe didn’t fit, and her symptoms were characteristic of sixteen other illnesses, some psychosomatic. This was tough to get across. I walked her through what Lyme really looks like, and what the blood tests and x-rays showed. I explored other diagnoses, like depression or fibromyalgia.

“Why won’t you just give me the doxycycline, doctor – what’s the harm?” she asked.

Great question! It’d be so much easier. She’d leave happy, I could see the next patient on time. It’s a huge temptation. It’s also wrong. If she doesn’t have Lyme disease, antibiotics against Lyme disease can’t help, and unnecessary antibiotics can hurt people.

So I choose sympathy, education, and patience. Sometimes this strategy works. Other times the patient leaves my office angry. Mrs. Burgdorf called me “heartless” on her way out.

What is the real diagnosis? Mrs. Burgdorf and the others like her defy easy categorization. They have vague and often unexplained symptoms. They want an answer. They hope for a simple diagnosis, a simple cure, and I can’t blame them. Some have fibromyalgia. Others have depression. A few have post-treatment Lyme disease syndrome, a non-infectious cause of fatigue much like the late languor of mononucleosis. Still others probably have something we just haven’t discovered in 2013.

I try to be frank, and modest, and to avoid ad hoc human experimentation. If the diagnosis isn’t Lyme disease, I admit it, and avoid potentially harmful treatments. I try not to label my patients as crazy even if sometimes it crosses my mind. I try to imagine what desperation feels like day after day, and how easy it would be to hope for an answer, any answer, even if the evidence doesn’t add up. In 2053, I hope doctors will laugh at what we knew today. But since it’s not 2053, I avoid offering unproven treatments to desperate people just because it’s the easy way out.


Look out – the ticks are coming! Here are a six take-home points about Lyme disease:

  1. A single dose of doxycycline can prevent Lyme disease in people who discover a tick that has been on their body for more than 36 hours.
  2. In the right areas of the country, the diagnosis of Lyme disease should be considered in anyone with a rounded (or target) rash, a single swollen knee, heart block or meningitis.
  3. The diagnosis of early Lyme disease is often made on clinical grounds, such as on the appearance of the classic rash. Later on, blood tests are really helpful and rarely miss the diagnosis.
  4. Oral doxycycline – and rarely intravenous antibiotics – almost always cure Lyme disease.
  5. Post-treatment Lyme disease syndrome is a rare non-infectious syndrome that looks a lot like mono. Even months of intravenous treatment does nothing so the best doctors avoid human experimentation.
  6. Many different diseases cause muscle aches and fatigue, so don’t believe the web sites that tell you every ache and pain is evidence of Lyme disease. 

Lyme disease starts when a blood-thirsty tick called Ixodes has lunch, rudely regurgitating a bacterium called Borrelia into the skin. Don’t let another bloodsucker – medical quacks –in on the fun. For more info about Lyme, check out Michael Specter’s New Yorker article “Lyme Wars,” this list of myths from HuffPo, and the CDC’s great website about Lyme.


Posted on August 7, 2013 .