Los Gatos family deals with the debilitating effects of Lyme disease
By Judy Peterson
A bite from a tiny tick has been ruining the lives of the members of a Los Gatos family as they struggle against Lyme disease.
May is Lyme Disease Awareness Month, and Donna Carson has a message concerning the vector-borne illness. “It has been found in all 50 states, yet many people, including some doctors, don’t think we have it here and don’t think of testing patients for it,” Carson said. “It is in Los Gatos. My daughter, my husband and the four other families in Los Gatos we know with Lyme are proof that it’s here and that it can be an incredibly debilitating and costly illness if not caught and treated early.”
Carson’s 15-year-old daughter, Megan, was diagnosed with Lyme in February 2011, but the diagnosis came after a battery of tests, misdiagnoses and wide-ranging symptoms including joint pain and swelling, muscle and stomach pain, constant fatigue, light and sound sensitivity, headaches and memory loss.
Carson’s husband was diagnosed in May 2011 and this week her 13-year-old daughter, Katelyn, will find out if she has Lyme.
“I got sick in seventh grade,” Megan said. She missed part of seventh grade and all of eighth grade, and now as a freshman she is able to go to a few classes at Los Gatos High School a couple of days a week. For the most part, she and Katelyn are home-schooled.
“I’ve missed my best friends’ birthday parties, basketball and football games and dances,” Megan said. “I’m still enrolled in school, but I have a lot of work to do on my own. I can take some classes online, and they give me extended due dates for assignments and less homework.”
She says her teachers and school administrators have been wonderful. “I took my Christmas finals three months after the holidays,” Megan said, “and I have a study skills class where teachers help you get your work done.”
No one knows how the family members got sick. “We saw several ticks on our Christmas tree three years ago,” Megan said.
The easiest way to diagnose Lyme is if a “bull’s-eye” rash appears on your skin. “The problem is people often don’t see the rash and don’t even know they’ve been bitten because when ticks are in the nymph stage, they’re the size of a poppy seed,” Carson said. “That’s when most transmittals occur.”
Carson added that transmission does not occur between family members.
Every Monday, Megan goes to a Lyme disease specialist in Redwood City, where she has a new IV tube implanted in her arm. “After taking 25 to 30 antibiotics a day, I had surgery and had an IV implanted in my chest, but a blood clot pushed the line out. So now I get a new IV every week,” she said.
Meantime, Katelyn is anxiously hoping that she does not have Lyme. “I started showing symptoms a few months ago, with stomach aches, memory loss, vivid dreams and sleepwalking,” Katelyn said.
Carson says those are all examples of Lyme’s dramatic impact. “Katelyn wanted to take a dance class in Cupertino, and her dad asked, ‘Where’s Cupertino? Is it a nice place?’ It affects all cognitive functions.”
The effects of treating Lyme disease when it has reached the extent where memory loss is occurring are prohibitively expensive. The Carsons have medical insurance, but it doesn’t get close to covering the estimated $7,000 to $9,000 the family spends monthly fighting Lyme.
Megan says it appears the antibiotics are working, and although she experiences constant joint pain, she does have good days. “It goes in cycles,” she said. “There are days when I feel better and days when I can’t get out of bed. A better day is when I can get to class or go to a friend’s house on the weekend.”
Lyme disease is named after the town of Lyme, Conn., where it was discovered in 1975 after a mysterious outbreak of what was first thought to be juvenile rheumatoid arthritis.
Although it is the most common tick-borne disease in the Northern Hemisphere, Carson says she’s met people from Canada being treated in Redwood City.
“Doctors in Canada won’t treat people for Lyme because they don’t think it’s there,” she said.
Of the four other Los Gatos families she’s met whose members have Lyme, Carson says two families caught the disease in its early stages, while two others caught it in later stages. “Their pediatrician said it’s not in California,” Carson said.
So Carson’s message of awareness is simple: “We don’t want others to have to live this nightmare. This is an awful club that we and the other families fighting Lyme hope no one else has to join.”