Overlooked or misdiagnosed Lyme disease can lead to serious consequences
- Font Size:
- Default font size
- Larger font size
Posted: Tuesday, May 15, 2012 12:00 am |Updated: 12:52 am, Tue May 15, 2012.
In September of 2010, Holly Zetlmeisl, of Taylorsville, was feeling way more tired than a 14-year-old should.
“It was hard to get up in the morning, everything hurt, and to last through the day,” she said.
Besides the fatigue, muscle aches, headaches and even double vision at times. She had to give up competitive swimming because it would take a week for her body to recover after each competition.
Her mother Terry Zetlmeisl wouldn’t have known what to think of her daughter’s unusual symptoms if she hadn’t seen her neighbor’s son go through so many similar symptoms — and been found to have persistent Lyme disease.
Holly never had the telltale bull’s-eye rash that her older sister had exhibited when she had contracted Lyme. When she went in for her first test, she tested negative as well.
But Terry Zetlmeisl pursued taking her daughter to a Lyme specialist in the Washington, D.C., area that she saw in December 2010. After running more specific tests, the specialist found that Holly had not only Lyme but the fellow tick-transmitted diseases of Babesia and Bartonella.
Holly went through seven months of intense treatment with antibiotics and supplements to combat the infections, including three months of intravenous antibiotics. At times she was taking 24 pills a day, Terry Zetlmeisl said. But when Holly started to feel better last summer, they knew that the treatment, and all of the out-of-pocket expenses they had to pay for it, was worth it.
Thirty years ago, researchers made the connection between Lyme disease and tick bites, but it took many more years for the public to understand how to recognize the symptoms and the importance of preventing tick bites.
Today, the Centers for Disease Control and Prevention report that the majority of Americans now know that the bull’s-eye-shaped rash is a sign of Lyme, and that joint pain is another possible side effect. Awareness has led to more detection, with the number of reported cases increasing from 9,908 cases in 1992 to 19,931 cases in 2006 — a 101 percent increase, according to a CDC report. In 2010, there were 22,561 confirmed cases in the U.S., with another 7,597 cases listed as probable cases that had not yet been confirmed.
But the CDC states that only 70 to 80 percent of people who contract Lyme develop the rash. Arthritis and joint swelling is considered a late stage symptom that can arrive months to years after the initial tick bite, and occurs in about 60 percent of patients. And the CDC estimates that 10 to 20 percent of people who contract Lyme disease see even more serious symptoms, such as cognitive defects, sleep disturbance and fatigue, even after receiving the standard treatment for Lyme.
However the CDC does not believe that these ongoing symptoms are a sign of a continued infection or that prolonged use of antibiotics should be administered in these cases. But patients such as Holly Zetlmeisl believe that the antibiotics are the only way to cure Lyme and get relief from their symptoms.
Dr. Kenneth Singleton, of Towson, a Lyme specialist, agrees that the evidence supports the CDC’s rejection of chronic Lyme, but that’s only because the right research hasn’t been done yet.
“No one has been able to show in humans that chronic Lyme can persist after antibiotic treatment,” he said. “In primates, however, it has been shown without question. Those of us on the side of chronic Lyme existing believe that we just haven’t done the correct kind of research to really document what we know clinically to be true.”
Singleton said he had many patients with chronic symptoms that took several months to more than a year to be treated.
“Doxycycline is usually a very effective medication for Lyme, and obviously the sooner you get to the Lyme with doxycycline, the more likely you’ll have a cure,” he said.
But after a person’s been infected for six months or more, which often happens because the testing for Lyme is still so poor, then it takes more than one month of the drug to affect a cure, he said.
Infectious disease doctors argue that putting patients on long-term antibiotics leads to overuse and builds up resistance to the drugs.
“But doxycycline is one of those antibiotics that is used commonly for things like acne,” Singleton said. “You can be on acne medicine with doxycycline for two or three years and nobody has a problem with that. Lyme is much more devastating than acne, so it doesn’t make any sense.”
Chris O’Connell, a neighbor of the Zetlmeisls, was infected with Lyme when he was a sophomore in high school, though the test performed at his regular doctor’s office came back negative for Lyme. Some of Chris’ symptoms included aches on the bottom of his feet, fevers, joint swelling and fatigue, said his mother, Jodi O’Connell. One symptom he did not have is the bull’s-eye rash.
A doctor diagnosed him as having lupus and junior rheumatoid arthritis and wanted to treat him with steroids and methotrexate, a cancer fighting drug, O’Connell said. But the family knew others with Lyme disease who had experienced similar symptoms to Chris, she said, so they decided to take him to a Lyme specialist before going forward with the rheumatoid arthritis therapy.
It turned out to be a good decision, she said. Not only did Chris test positive for Lyme and some other tick-borne diseases, but the specialist told them that the steroids would have made the disease stronger.
Chris underwent two years of treatment with a combination of antibiotics and an anti-inflammatory diet free of sugar and white flour. He has now been symptom-free for two years, she said, and is attending college without lingering complications from the diseases.
“It kills me to think about how many kids and adults this is happening to,” O’Connell said. “It’s very complicated and it’s sad, too.”
Christine Schramm, 23, of Westminster, said she contracted Lyme disease in the summer of 2009 at her family’s home in Southern New Jersey.
“I never saw the tick, I never had the bull’s-eye rash,” Schramm said. “I just had a regular rash on my leg.”
A doctor in the emergency room at her local hospital said it was probably a spider bite and gave her a prescription for five days, she said. But in December 2009, she started having joint pain and problems with concentrating and memory.
She went to several different doctors, who diagnosed her with everything from arthritis to lupus to migraines. Finally, she found a doctor who had also had Lyme with similar symptoms, and she was finally given a prescription for long-term antibiotics. Since then she had done three cycles of treatments that lasted for three months each time.
Schramm is now in graduate school, and while some of her symptoms, such as the pain, have improved, she still finds herself fighting through the concentration and memory issues.
“It’s annoying, to say the least,” she said.
But the ordeal that she went through to get a diagnosis — and proper treatment — was almost as bad as the disease itself.
Singleton said these stories aren’t uncommon, and they show the importance of finding and using better tests so that people who have contracted Lyme or other tick-borne infections can be treated earlier, before the symptoms grow progressively worse.
“The biggest problem we have in Lyme medicine is accurate diagnostic testing,” he said. “We just think there needs to be a lot more money for committed research.”
