BREWER, Maine — It started with flu-like symptoms and progressed steadily. Fevers and rashes and aching joints followed. For four years, Ralph and Lisa Jordan of Brewer took their daughter to a growing list of doctors. The were seeking an answer to a painfully simple question.
What’s wrong with Sally?
It took nearly four years to find that diagnosis. Four years of pain. Four years of increasingly disabling pain. Four years during which an A-student became unable to last for more than an hour or two in a classroom and slept for much of the day. She had to stop cheering and playing basketball. She had to stop dancing.
Eventually, the mystery illness began having neurological effects.
“I was scared because I didn’t know what was going on,” now 11-year-old Sally said softly during a recent interview. “[One day] I was bending down to grab my pencil and I couldn’t pick it up because I lost feeling in my fingers. And then I lost feeling in my entire arm. I couldn’t write.”
Lisa Jordan said her daughter came to her on another occasion, complaining that she could hold her pencil fine, but when her brain told her hand to write, it wouldn’t obey.
Today, Sally is a fifth-grader at Brewer Community School. She is recovering. She has resumed dance classes. And she’s smiling again.
But for four years, there wasn’t much to smile about. Sally was sick. She thought nobody could cure her. Then, in December, she met a controversial Connecticut doctor who affirmed the suspicions that Ralph and Lisa Jordan had been living with — without medical confirmation — since their daughter was seven.
Sally has Lyme disease.
Sally’s message to others: You might have Lyme, too. You just might not know it. Yet.
A steady decline
Sally first became ill back in 2008. After several tests and some blood work, Ralph and Lisa Jordan asked doctors to test for a specific illness.
“We got a Lyme test because of some of the symptoms that she was having, and we thought that maybe she had Lyme, where we live in the country, we raise goats, she does horseback riding, she’s out in the woods all the time,” Lisa Jordan said.
Lyme disease is carried by deer ticks, which thrive in wooded, grassy areas. And though some people infected with Lyme disease see their tick bites and notice a bull’s-eye rash pattern, many more don’t. Sally doesn’t remember ever seeing a tick or having that rash.
The Lyme test came back inconclusive, and at some point doctors told the Jordans they suspected rheumatoid arthritis. For much of the next three years, that’s what Sally would be treated for, her parents said.
“For seven months [her health] failed miserably, but nothing was done because of her diagnosis of arthritis, and fever goes with rheumatoid arthritis,” Lisa Jordan said. “But nothing was working and nobody was helping us at that point.”
In 2009, Sally ended up with a severe kidney infection and spent four days in the hospital. Two weeks of antibiotics seemed to cure that ailment. The relief was short-lived.
Adding to the confusion: An appointment with a specialist in Boston showed that Sally didn’t have rheumatoid arthritis at all. Instead, a kidney infection or an infectious disease was suspected. More antibiotics followed, and again Sally rebounded through the late spring of 2009.
“We got our child back,” Lisa Jordan said. “We thought we’d conquered it.”
The worst is yet to come
After a couple more years of frequent doctor visits and persistent aches, rashes and bouts of fever, Sally’s condition rapidly deteriorated in September 2011.
“It hit with a vengeance,” Lisa Jordan said. “She had a couple vaccinations, and right after that it wreaked havoc in her body. She was pretty much bed-ridden. [Her] sore throat came back. Cough came back. Rashes, fevers, pain everywhere.”
And mentally, Sally had begun to slip as well.
“She could no longer read and write. She went from an A student to a student who couldn’t do work,” said Lisa Jordan, a kindergarten teacher. “It was neurological now.”
Even the most simple instructions had to be given step-by-step — “Go upstairs. Sit on the bed. Put on your socks.”
Sally said that she had grown so accustomed to being sick, she didn’t think “healthy” was an option.
“[It was] really bad,” she said. “[I felt] scared. Alone.”
Eventually, Ralph Jordan made a phone call that changed everything.
“By happenstance, I called my eye doctor. His wife had Lyme disease for about a year, but it went undiagnosed. [I asked him], ‘How did you actually get a diagnosis?’” he said.
The doctor put the Jordans in touch with Dr. Beatrice Szanter, who told the Jordans who to see, what questions to ask and what tests to request. After one appointment with another doctor, they were given the name of a particular specialist who might be able to help.
His name: Dr. Charles Ray Jones.
Finally finding answers
In what Lisa Jordan calls “the Lyme world,” Jones is a rock star. According to published reports, he has treated thousands who are afflicted with the disease. He also has many powerful critics and has faced legal and professional sanctions in the past.
The Jordans traveled to Connecticut to see Jones in December. Lisa was impressed that he knew everything in Sally’s 500-page file without referring back to it. Sally was impressed that the doctor said the words she’d waited so long to hear.
“[He said], ‘You’re fixable,’” Sally said.
Sally said the hours she spent with Jones in Connecticut were painful, with Jones poking and prodding to find out where the infection was causing the most problems. From the top of her head to behind her ears to her joints, Jones pointed out the effects Lyme was having on Sally.
“It wasn’t that fun, but he’s the one who actually saved my life,” Sally said. “So I’m very thankful for that.”
Today, Sally is still on the mend. She’s taking about 30 pills a day, including many to help her system flush out the antibiotics that she’s been prescribed. Her diet — as well as that of her parents — has also changed.
“We’re on a gluten-free, dairy-free, soy-free, sugar-free diet,” Lisa Jordan said.
Sally said she’s rarely tempted to eat outside of her diet, but there are a couple of things that she’d like to taste again.
“[I miss] nothing, because I knew if I ate it it would make me feel bad,” Sally said. “But what I really do miss is ramen noodles and macaroni and cheese.”
And while Sally may be on antibiotics for one to three years, her parents say that she’s making steady progress. Sally agrees.
“[I feel] a million times better,” Sally said.
And now that she’s feeling better, she’s eager to help others.
On Tuesday, March 20, the Jordans will join Szantyr and nurse Constance “Happy” Dickey for what’s being called a “Tick Talk” at the Brewer Community School’s performing arts center. The program will last from 6:30 p.m. until 8 p.m., and speakers will talk about Lyme disease awareness and prevention.
“Our mission is, ‘one person with Lyme disease is too many,’” Lisa Jordan said. “We need to educate the community and prevent it. People need to be aware that they need to check their dogs, their kids. Just playing in their backyards [can put them at risk].”
Although it involves talking about her health issues, Sally is eager to pitch in. Because Lyme disease isn’t just about Sally Jordan.
It’s about her dad, Ralph, who has also been diagnosed. It’s about her little sister, Lydia, whose tests are inconclusive. And it’s about thousands of others who may be struggling with health issues that nobody can explain.
“[I want] to help raise awareness and help prevent people from being bitten and diagnosed,” Sally said. “And not having them suffer like I did, and the other people that have Lyme [disease] did.”
For more information on ticks in Maine, go to http://umaine.edu/ipm/ipddl/publications/5047e/.