The psychological effects of Lyme disease

Can a tick bite drive you crazy?

Doctors warn that Lyme disease may cause personality changes

By Valerie Andrews
January 2004

A walk in the woods nearly cost Mike M. his sanity. After receiving multiple tick bites, Mike broke out in an angry rash and his joints began to ache. In the next few months, his behavior grew increasingly bizarre. He was no longer able to read or concentrate, and became so anxious he couldn’t leave the house. Eventually, Mike was treated for chronic Lyme disease, an illness that can play havoc with the mind.

Since its discovery in 1975, Lyme disease has reached epidemic proportion in the United States. While the Centers for Disease Control reports 19,000 cases of this tick-borne illness in 2002, the agency estimates that the actual number may be tenfold higher: 190,000—that’s four times the rate of new HIV infections.

“Lyme disease is a major problem yet, tragically, many people fail to receive the proper treatment,” says Bernard Raxlen, MD, a Greenwich, CT, psychiatrist and secretary of the International Lyme and Associated Diseases Society (ILADS), a medical organization dedicated to ongoing research and increasing public awareness of this devastating illness.

Lyme often begins with flu-like symptoms, headaches, fatigue, swelling of the joints, muscle pain and gastrointestinal distress. Most physicians have been taught to look for evidence of a tick bite and a red bull’s-eye rash, yet fewer than half of all Lyme patients recall being bitten or develop tell-tale skin eruptions. As a result many are misdiagnosed with other disabling illnesses such as chronic fatigue, fibromyalgia, or MS.

As Lyme disease progresses, it can attack the nervous system, producing learning disabilities, mood swings, anxiety and depression, panic attacks, obsessive behavior, sudden rages and other psychiatric diagnoses. Says Raxlen, “When this happens, we’re looking at a completely different syndrome and one that is harder to cure.”

A recent European study shows that psychiatric in-patients are nearly twice as likely as the average population to test positive for Lyme, and the National Institutes of Health are currently sponsoring a major study of neuropsychiatric Lyme disease in an effort to illuminate specific changes in the brain.

Psychiatric Lyme has been linked with virtually every psychiatric diagnosis and can affect people of all ages and from every walk of life. A former honor roll student is diagnosed with Attention Deficit Disorder and pegged as a “problem kid” because he can’t sit still in class. A lawyer has to close her practice because she can’t concentrate and suffers from anxiety attacks. A young mother is so sensitive to noise that she can no longer tolerate her baby’s cry and is afraid that she will harm her child. A retired salesman develops a compulsive habit of writing all over everything—he covers everything from the tablecloth to matchbooks with meaningless scribbles.

Family members are baffled by these transformations; counselors and physicians are consulted, often to no avail. While these individuals may also have migrating muscles pain, headaches and problems with their joints—common signs of Lyme—these symptoms are rarely picked up in a mental health evaluation. And when traditional psychiatric medication fails to produce a cure, the patient grows more desperate.

The Search for a Diagnosis

“Most people come to see me because they’ve got something wrong that nobody else can figure out,” says Debra Solomon, MD, a psychiatrist who practices in North Kingston, RI. Fifteen years ago Solomon was confronted with a medical mystery. More and more patients were coming in with the same group of symptoms—fatigue, headaches, migrating joint and muscle pain, accompanied by anxiety, depression, and memory problems. When one of her patients turned out to have Lyme disease, she tested the others, and found that nearly all were positive.

Recent studies show that certain areas of Rhode Island have the highest tick population in the world. Today many of Solomon’s patients come from the island Jamestown, a small farming community where ticks are abundant. Among her cases are:

“Lyme affects nearly every person on this island,” says Solomon, “yet each person responds to it in very different ways.”

How can a physician tell the difference between true mental illness and symptoms linked to Lyme disease? With Lyme disease, a patient’s psychiatric symptoms don’t quite fit the textbook definition. There is usually no previous history of psychiatric illness. Symptoms often come in cycles. Patients usually do not respond well to psychiatric medication. And they often describe their problems in very physical terms.

Lyme patients often say, “There’s a wall in my brain and I can’t seem to move my thoughts from the back to the front.” “This arises from encephalopathy, an inflammation in the brain that affects cognitive function,” Solomon explains.

Symptoms often worsen as the Lyme bacteria grow active and begin to reproduce. At the same time, a patient may experience physical symptoms, such as fatigue, muscle pain or headaches. Flare-ups are often triggered by stress, as in the case of Bob C. who ran a shipping department for a manufacturing company. Bob had dozens of people answering to him, but Lyme disease made him anxious and unable to concentrate. Because he couldn’t think, he lost his job, and his symptoms grew more intense.

Family problems, economic changes, job loss, surgery, an auto accident, or a bad case of the flu, can send Lyme patients into a sudden tailspin. Along with antibiotics, these people need to rest—and do anything they can to lessen their emotional load.

The catch-22 is that chronic Lyme disease makes it hard to think and perform one’s daily tasks. This inevitably causes financial hardship and puts a strain on family relationships.

Effects of Lyme Disease on Marriages

“My patients come in to talk about their marital problems and are surprised to learn that they are linked to an organic illness,” says Virginia Sherr, MD, a psychiatrist who practices in eastern Pennsylvania, another region known for its high rate of tick-borne infections. Ninety percent of Sherr’s patients test positive for Lyme disease. She then has the job of describing to them just how this condition can affect the mind and the emotions.

Lyme disease can cause increasing irritability and dramatic flares of anger, says Sherr.

“Suddenly you hear bone-cutting verbal assaults from people who are usually more measured and benign. They may have been harboring some small grievance for years, then that hot spot comes to life and they spew out all this venom. Such outbursts cause lasting wounds.”

While some Lyme patients become verbally abusive, others lose confidence and withdraw from social situations. Mary L. tried to explain to her husband that she no longer had the stamina for dinner parties and that she dreaded going out. The husband felt that she was faking it. “Mary’s husband and her internist, who knew little about Lyme disease, ganged up on her,” Sherr reports. “The doctor said, ‘You used to be so full of life, but you’ve less yourself go completely. You’re not even trying!’”

“Physicians who don’t know that Lyme causes personality changes may be dismissive or sharply critical of the patient. Our goal should be to educate couples and help them cope.”

Sherr cites one devoted couple who are both infected with Lyme disease. “The man has major cognitive problems and the wife helps him with his memory. She has bouts of extreme impatience, yet he gently guides her through them.” They have begun to weather the storm together—with the help of antibiotics and marriage counseling.

Lyme Disease and Domestic Violence

“Lyme disease often strikes an entire families and the result is a higher incidence of divorce, family dysfunction, and domestic violence,” says Robert Bransfield, MD, a psychiatrist in Red Bank, New Jersey. “Tempers flare and you see increasing conflict.”

“Lyme disease is like an injury of the brain,” says Bransfield. “Patient are less able to think things through, and tend to act impulsively. A mother may suddenly lash out at her child and a husband may lose control and abuse his wife. “We underestimate the role of infectious disease in domestic violence,” he adds.

AN OUNCE OF PREVENTION

Lyme disease is a hazard for anyone who spends time outdoors: avid hikers, gardeners, campers, cycles, runner, fishermen and hunters. Yet house-bound people can also pick up Lyme disease from the family pet. Lyme disease has been reported in every state in the nation, and can easily be picked up by those vacationers, especially those traveling to endemic areas along the East coast, Texas, certain portions of the Midwest, and Northern California.

In the spring, the biggest danger comes from nymphal ticks the size of a poppyseed and which are hard to detect on skin or clothing. By summer the ticks have grown to the size of a sesame seed. It’s best to wear long sleeves and tuck pants into your socks or high top footwear. Avoid high grasses and heavily wooded areas. Spray exposed arms and legs with DEET. Inspect yourself and your family for ticks. Use a tick comb on cats and dogs.

If you are bitten by a tick, see a physician knowledgeable about Lyme disease and get tested immediately. ILADS recommends using a laboratory that specialize in Lyme disease, such as IGeneX, in Palo Alto, California or IDL in Mt. Laurel, New Jersey.

To learn more about Lyme disease and to find a physician in your area, go to the ILADS’ website at www.ilads.org. Other helpful sources include the Lyme Disease Association (www.lymediseaseassociation.org) and the Lyme Disease Network (www.Lymenet.org)

An aggressive response is more likely if, in addition to Lyme disease, a patient has another tick-borne infection called Babesia. More than one infection can be transmitted by the same tick, and when Babesia is added to Lyme, this may make the patient more aggressive. “It’s like putting a match to gasoline,” Bransfield says.

Bransfield has testified in court on behalf of such patients who have been accused of everything from assault to murder. (In one instance, a patient killed his partner, killed the family pet, then killed himself.)

People with Lyme disease alone usually don’t go to these extremes. However, they may be irritable and prone to sudden rages. Bransfield says young people are the most likely to act out. “I’ve seen so many straight-A kids whose grades suddenly start to slip. Then they rebel against the family and start fighting with their peers.” They can also turn their rage against themselves. “I’m often on the phone with a teen in a state of crisis,” says Bransfield, “Feeling suicidal comes in waves and these reactions are very hard to predict. However, these kids generally improve after being treated with antibiotics.”

Schools are becoming more enlightened about the problems caused by tick-borne diseases, Raxlen notes. In Newtown, CT, for example, teachers are asked to report any sudden dips in grades or unusual behavior that may be linked to Lyme disease. And many make special arrangements for at-home tutoring while the student convalesces.

Losing Control of Life

When Lyme disease goes undiagnosed—or isn’t treated long enough—it can bankrupt businesses and destroy whole careers.

A CEO of an insurance company was diagnosed with Lyme disease and given antibiotics—but he didn’t take them long enough. Months later, his symptoms returned with a vengeance. He had ghoulish nightmares and woke up drenched. At work, he felt anxious and couldn’t concentrate. Eventually he forgot everything he’d learned about insurance. When he neglected to send in a disability payment on his own policy, the company denied his claim. “This man lost tens of thousands of dollars that would have helped him through his illness,” say Raxlen. “In the end, he had to sell his building and disband his business.”

People with Lyme disease often have trouble keeping up with ordinary tasks—one Connecticut housewife walked into the library, dumped her dry cleaning on the counter, and waited with increasing irritation for an attendant to help her. Finally a friend walked up and asked, “Don’t you know where you are?”

Lyme disease can also affect the part of the brain that deals with signs and symbols—making it hard to read maps or drive from place to place. A real estate agent with Lyme disease stopped at a traffic light. When the signal turned green she didn’t move. An angry motorist yelled, “What’s the matter with you. Why can’t you go on the green?” The woman replied, “I’ve forgotten what green means.”

“Lyme produces a microedema, or swelling in the brain,” says Raxlen. “This affects your ability to process information. It’s like finding out that there’s LSD in the punch, and you’re not sure what’s going to happen next or if you’re going to be in control of your own thoughts.”

ILADS physicians say these symptoms can be alleviated or reversed with antibiotics, but stress that Lyme disease must be diagnosed early and treated right away.

Treating Lyme Disease

Most doctors prescribe three to four weeks of antibiotics for initial cases of Lyme disease. Yet according to the ILADS, this is not enough. The Lyme bacteria has a “cloaking device” that enables it to hide in the cells and body tissues. If it’s not completely eradicated, symptoms will recur and with great intensity. To avoid relapses, ILADS recommended six to eight weeks of antibiotics.

When Lyme disease moves into a chronic stage, it’s more likely to lead to neurological or psychiatric conditions. Chronic Lyme patients are harder to cure and may need to take antibiotics—orally or intravenously—for months as a time. In this case, ILADS recommends continuing treatment for at least six to eight weeks after all symptoms are resolved.

“Lyme disease is often misdiagnosed and it’s costing our healthcare system untold millions of dollars,” says Raxlen. “No one is spared, neither young nor old and each individual can display a puzzling array of symptoms. This illness can have a wide-ranging affects on marriages, families and jobs.”