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:
- A college student
in her early twenties who started hearing voices. “She came from
a good family and had no previous emotional problems,” says Solomon.
- A businesswoman
who suddenly became manic-depressive. “In periods of high energy,
she wouldn’t sleep and felt all-powerful. She’d start a new
business and begin spending lots of money, then she’d crash.”
- A high school athlete
had to drop basketball because he didn’t have the stamina and couldn’t
get through his classes without falling sleep. “The teachers accused
him of not paying attention, but he didn’t have the concentration
to do the work.”
- A 40-year-old book
editor who was gaining weight and getting lame in her left leg. “She
couldn’t think or process information, and was worried about her
job.”
“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.
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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)
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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.”
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