Ted Simons can’t remember the content of a recent phone conversation. When he reads, an activity he has always enjoyed, he has trouble understanding and retaining what he’s read.
Yet Simons, a performer and composer of music, can still play the piano and remember thousands of songs.
The 78-year-old Westport resident and his wife Jean don’t know what’s wrong.
Tests have shown it’s unlikely he has Alzheimer’s disease, though he shows signs of dementia.
The couple has tried various therapies, but nothing has worked for long, they say.
After talking to doctors, however, the Simons have developed a theory of a cause for Ted’s confusion and memory problems: Lyme disease.
The illness, spread by the tick bites, can affect different organ systems, including those of the heart or brain, but is usually associated with symptoms such as arthritis and the expanding red rash at the site of the bite said to resemble a bull’s-eye.
Some doctors believe the disease might also spur certain cognitive and psychiatric symptoms in some patients, but others say there’s no hard scientific evidence to link Lyme disease and some of these problems.
The ticks are out
Lyme Disease concerns generally start to spike around this time of year, when more people are outside and are, theoretically, more vulnerable to tick bites.
According to the Centers for Disease Control and Prevention, there were 29,959 confirmed cases of Lyme disease in 2009 – 2,751 of them in Connecticut.
The national total has risen significantly since 1995, when there were 11,700 cases in the United States.
The disease gets its name from Lyme, CT, where the illness was first spotted in the state in 1975.
Lyme disease is caused by the bacterium Borrelia burgdorferi and has long been considered a problematic illness.
Lyme Disease is easily treated with antibiotics in the early stages. The problem, however, is that Lyme disease can be difficult to diagnose because symptoms can mimic other disorders (such as the flu) and therefore go untreated… with long term consequences.
What are the symptoms?
There’s also some controversy over Lyme Disease and its symptoms.
Some doctors believe Lyme disease can be linked to a wide range of symptoms, including Dr. Brian Fallon, a Fairfield resident and Director of the Lyme and Tick-Borne Diseases Research Center at Columbia University.
Fallon said Lyme Disease can, for instance, manifest in cognitive problems that might show up months or years after infection.
He said the illness has also been linked to certain psychiatric reactions, including depression, obsessive-compulsive disorder and anxiety.
“When Lyme disease affects the brain, it can affect any activity the brain might produce,” Fallon said.
He said, though these manifestations are “less widely understood” than symptoms like the rash, there have been some studies indicating a connection between Lyme disease and psychiatric problems.
Ted Simons contracted the disease eight years ago. The first signs of his current problems surfaced during a Lyme flare-up several years later.
Ted began telling Jean he felt like he was in a “brain fog,” where he couldn’t understand anything.
Then, three years ago, he had heart valve replacement surgery and, afterward, his disorientation was even worse.
“It was like he all of a sudden had dementia,” Jean said. “It was scary. I thought it was the effect of the anesthesia, and it would wear off.”
Though she said he has gotten a little better since then, he still has serious problems with memory and comprehension. Sometimes he’ll put an item in the toaster that he meant to put in the microwave.
He’s had to stop driving because he gets too confused.
Though doctors don’t know the exact cause of Ted’s problems, some have pointed to the Lyme disease as a possible cause. Jean herself strongly believes the disease and Ted’s challenges are linked.
“All I know is that he was fine until he got Lyme disease,” she said.
Fallon, who isn’t Ted Simons’ doctor, said it’s possible his cognitive symptoms could be related to Lyme disease, as symptoms like his can surface years after the initial infection.
However, he added, given the man’s age and other health issues, it’s possible there are other factors at play.
Can Lyme disease return?
Meanwhile, Dr. Eugene Shapiro, professor of pediatrics, epidemiology and public health and investigative medicine at Yale University, said there’s no hard scientific evidence of a connection between Lyme disease and psychiatric issues.
Shapiro has frequently spoken out against the concept of chronic Lyme disease, the idea that Lyme disease can lie dormant and resurface with various symptoms.
He said that, too often, Lyme disease is used as a sort of catch-all diagnosis for certain symptoms that likely aren’t even related to the illness.
“That doesn’t mean you don’t have a problem,” Shapiro said, just that it’s probably not Lyme disease.
Posted May 3, 2011, as edited by HTNP.com Editor Brenda Sullivan
Originally published in The Connecticut Post as “New concerns over Lyme Disease,” reposted on this site through an arrangement with The Chronicle
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