Our Lyme Disease Story

How the Lyme Disease Test Failed Me

Did a Lyme test fail you? If you have Lyme and had the standard Lyme disease test, there’s a forty-four percent chance it did. 

Partway into the development of my forty Lyme disease symptoms, I made an appointment. Instead of seeing the doctor I’d met the year before, my husband, Mark, suggested I see his primary care provider.

On Friday, September 14, I went to see Mark’s physician’s assistant (PA). When I shared my symptoms with the nurse, she said the PA would probably test me for Lyme disease. He did order blood work for Lyme plus thyroid problems and vitamin deficiencies. 

“Yes!” I thought. “I’m on my way to a diagnosis.”

How the Lyme Disease Test Failed Me
Image by Belova59 from Pixabay

Over the weekend, my neck became so sore and stiff that, even when I barely moved, I dissolved into tears. Mark thought I broke my neck and was considering taking me to the ER. Instead, he phoned the on-call doctor.

By that point, I was convinced I had Lyme disease. These were all symptoms of Lyme, and nothing else seemed to adequately explain them. 

Bewildering Blood Work

But my PA called on Monday morning to say my blood work looked good, and my Lyme test was negative.

False negative Lyme disease test
Image by Gerd Altmann from Pixabay

“Then why do I feel so sick?” I wanted to cry. “Why am I having all these symptoms?” Instead, I told him I had heard and read that Lyme tests frequently give false negatives.

Recently, I learned he should have told me that. Maryland and Virginia physicians must tell patients “a negative Lyme test does not necessarily mean they are Lyme-free.”

The Standard Lyme Disease Test

The CDC's Two-Tiered Lyme Disease Test

In fact, here’s how an article in the British Medical Journal describes the standard test:

“The two tier testing system endorsed by the Centers for Disease Control and Prevention (CDC) has a high specificity (99%) and yields few false positives. But the tests have a uniformly miserable sensitivity (56%)—they miss 88 of every 200 patients with Lyme disease. By comparison, AIDS tests have a sensitivity of 99.5%—they miss only one of every 200 AIDS cases.

“In simple terms, the chance of a patient with Lyme disease being diagnosed using the commercial tests approved by the Food and Drug Administration and sanctioned by the CDC is about getting heads or tails when tossing a coin, and the poor test performance assures that many patients with Lyme disease will go undiagnosed.”

In other words, forty-four percent of people with Lyme will test negative. Adding in false positives, the test gives the wrong answer forty-five percent of the time. In school, getting the answers right only fifty-five percent of the time fails. How is this the standard Lyme disease test?!

How the Lyme Disease Test Failed Me
Image by Ahmad Ardity from Pixabay

Instead of sharing these statistics with me, my new PA suggested I give it a couple weeks and see if I felt better. If not, we would look further into the cause of my complaints.

Two days later, Mark called our PA and said, “I’ve never seen my wife like this.” Click here to continue reading my story!

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