Novelist Amy Tan’s Experience With Lyme Disease

On her web site, bestselling novelist Amy Tan shares her belief that she has late-stage neuroborreliosis, or Lyme disease. She suspected she might have Lyme disease because of her mysterious symptoms that included migrating aches and neuropathy, a racing heart, hallucinations, getting lost in familiar places, difficulty talking, plunging blood sugar, insomnia, and fatigue. She finally found a doctor who was able to confirm the diagnosis. After years of expensive treatment, Tan can now manage her symptoms, but she doesn’t expect to ever be cured.

Tan feels fortunate to have a doctor who will provide her with ongoing treatment and that she has health insurance to pay for it. She writes, “Most Lyme patients are denied insurance. They are viewed as whacky. They have gone without appropriate care for so long they have lost their health, their jobs, their homes, their marriages, and even their lives.” This may sound familiar to many people with chronic pain.

What Is Lyme Disease?

Lyme disease is a bacterial infection that’s caused by borrelia burgdorferi and is transmitted by deer ticks. It sounds straightforward. But in a Huffington Post article, “The Lyme Wars: Meet the Players,” David Michael Conner explains that Lyme disease has become politicized.

The Centers for Disease Control (CDC) says that Lyme disease is hard to get and easy to treat. Its web site reads, “People treated with appropriate antibiotics in the early stages of Lyme disease usually recover rapidly and completely.”

However, a 2009 Oscar winning documentary, “Under Our Skin,” examines the other side of the story. It looks at patients who have been bedridden, and misdiagnosed, for years by what some specialists are now calling chronic Lyme disease.

The film’s main message is that Lyme disease is going to be an explosive area of medicine, the way that HIV once was. It makes the case that Lyme disease could be causing such neurodegenerative diseases as multiple sclerosis, ALS, Parkinson’s, and Huntington’s.

Much of what “Under Our Skin” says seems well supported. While I am not an expert in the field, it seems indisputable that some people are suffering chronic pain from Lyme disease.

Many people with Lyme disease talk about the stigma attached to their suffering, and the fact that most of their doctors have insisted that their condition was psychosomatic. Alyssa L., a young woman I know who was just diagnosed with Lyme disease, is an example. She said, “I repeatedly have been told by my doctors that I was just trying to get attention, and that I was making up my symptoms. That’s made things so much worse for me.”

This is not the way to help people who are suffering. The three most powerful words I used in my career as a physician were “I believe you.” The effect those words have on patients is pure magic, and it costs nothing.

Lyme Disease Is Not All in Their Heads

For Amy Tan, Alyssa L., and countless others who believe they suffer from chronic pain due to Lyme disease, it’s clear that the problem is not all in their heads. In fact, some doctors and researchers believe there’s a possibility that Lyme disease has become a widespread epidemic. Even celebrities whose names you know — among them, Alec Baldwin, Christie Brinkley, George W. Bush, Ben Stiller, Richard Gere, and Alice Walker — have sought treatment for the disease.

Some patients who believe they have Lyme disease have managed to find treatment that keeps their symptoms under control and to get their lives back. Getting an appropriate diagnosis is the first critical step on the road to their recovery. After that, it can take years of sustained effort and expense to see positive results.

Why isn’t there more discussion about this? There are probably several reasons. It is not an obvious physical problem. With its lack of visual evidence, Lyme disease is relegated to the category of a deviant behavior and not a disease in the minds of some authorities. In other words, as Alyssa experienced, many doctors assume the patients’ symptoms must be all in their heads.

There have been other conditions, including migraines, leprosy, and HIV, that took many years to become validated by the medical community. In fact, people with fibromyalgia and chronic fatigue syndrome still struggle to have their diseases accepted as legitimate.

Additionally, insurance companies resist accepting the validity of new diseases because of the open-ended treatment and cost. Doctors who run afoul of insurance companies and the CDC guidelines for treating Lyme disease, and who prescribe long-term treatment for patients with Lyme disease, risk being investigated by government agencies and medical boards. Treating a disease that some believe doesn’t exist can lead to losing a medical license or being charged for fraudulent billing.

“Under Our Skin” leaves us with the image of a doctor who slams his fist against his desk to intimidate a terrified patient with symptoms that suggest she has Lyme disease. He angrily insists that there is no such thing as Lyme disease.

Perhaps he is correct. Or maybe he’s wrong. But I do hope researchers will find the answers through science rather than bias, politics, and hubris.