Advanced Lyme disease: ‘a terrible place to be’
WAHPETON, N.D. – Brigid Steele’s life has been upended by the bite of a tick.
Her world has progressively narrowed as her health has deteriorated from a chronic infection that for years went untreated – the result, she said, of doctors’ skepticism that her problem was Lyme disease.
The 53-year-old gave up her career as a nursing home administrator more than a decade ago because of declining health, saw her marriage break up for the same reason, and now struggles to support herself as a massage therapist.
“I’ve had a tough time keeping my business rolling these past few years,” she said, citing chronic pain, fatigue and weakness that leave her bedridden for spells, especially after overexerting herself.
Although Steele tested positive for Lyme disease three times, beginning in 1996, she said a succession of doctors in the eastern Dakotas would not treat her for Lyme.
The reasons primarily were two-fold: The tiny deer tick that carries the bacteria that causes the disease was not yet known to be in the area, and only short courses of antibiotics are recommended by most infectious disease experts.
“Nobody would treat me,” she said. “Nobody would test me.”
Other possible causes of her health problems, including multiple sclerosis, fibromyalgia and a chronic pain syndrome, have been ruled out – leading some doctors to suspect the problem is more mental than physical.
“I’ve been tested for umpteen things,” she said.
Steele, the daughter of a doctor, finds herself caught in the middle of a medical dilemma that a Minnesota doctor who is an expert on treating the tick-borne disease said stems from a lack of clear answers to guide treatment for persistent Lyme disease cases.
“There’s just not enough evidence,” said Dr. Betty Mahoney, a family practice doctor in Wyoming, Minn., who is a medical adviser for the Minnesota Lyme Association. “It’s a terrible place to be. No one likes uncertainty, especially when people are terribly ill.”
Steele first learned her nemesis could be Lyme disease 18 years ago when a doctor prescribed a strong antibiotic for a bad case of pneumonia.
She was married with a young son, working as a nursing home administrator in Woonsocket, S.D., a farming town.
The antibiotics exacerbated pain she had been battling for years and made her sick. Her doctor in nearby Mitchell said her reaction was typical of people with Lyme disease, a bacterial infection she’d never heard of before, and asked her for permission to run a test.
The results came back positive. She was given the standard treatment, a two-week course of antibiotics. Her symptoms were worse and in a follow-up exam a couple of months later she again was given a two-week course of antibiotics after she again tested positive for Lyme disease.
An intravenous round of more powerful antibiotics provoked a strong reaction, and the doctor referred her to an infectious disease specialist in Sioux Falls after her third positive test for Lyme disease.
The specialist angrily confronted her, telling her there were no reported Lyme disease cases in the area at the time, and refused to treat her for the condition, Steele said.
Steele suspects she got the infection a dozen years earlier, in 1984, when she developed a rash on her lower back, where she experienced intense pain several months later – the beginning of an ordeal that persists to this day.
A little more than a year later, in 1998, Steele moved to Wahpeton, where she took another job as a nursing home administrator, a step up for her career. Her medical problems came with her.
In the years since, Steele would see a rheumatologist, physical medicine doctor and pain specialists who ran a battery of tests, but no further treatment or testing for Lyme disease. Doctors in North Dakota were just as skeptical as those in South Dakota about the infection.
Her symptoms – flu-like symptoms, pain, memory loss, debilitating fatigue – were always present, but fluctuated in their intensity. Then, in October 2012, nine years after she abandoned her career in nursing administration because of chronic poor health, Steele went to the emergency room in Breckenridge, Minn., with what she describes as a collapse of her immune system. The crisis that would finally cause her to confront her old enemy, Lyme disease, had arrived with an intense flare-up of symptoms.
“I had so much pain I could barely speak,” she said.
Risks of treatment
After almost two decades since she received antibiotic treatments for Lyme disease, the infection remains in her system. She has progressed to advanced Lyme disease, including arthritis and neurological problems.
Most people who become infected with the bacteria recover, but a small percentage of patients will progress to develop severe problems like those tormenting Steele.
Some people appear more susceptible to the illness, which is difficult to diagnose, because the symptoms are so similar to many other ailments and extremely difficult to treat. Left untreated or inadequately treated, severe health problems can result in the advanced stage of illness.
Last year, Steele found a doctor in Minnesota who was willing to treat her after a fourth test confirmed that Lyme disease lingers. In November, she began treatment with strong antibiotics that could last for one to three years.
Prolonged use of antibiotics to treat Lyme disease is not recommended by the Infectious Diseases Society of America, an organization of infectious disease doctors.
The IDSA holds that most Lyme disease infections can be eliminated with a course of antibiotics lasting 10 to 28 days. Using antibiotics for a very long time – months or years – does not offer superior results and can cause potentially fatal results, the society maintains, resulting from drug-resistant infections.
Maloney acknowledges the risks of prolonged use of antibiotics, but said doctors have used long courses of the drugs to treat other illnesses.
When someone is very sick, and not getting better, the patient and treating physician should be allowed to weigh the risks and possible benefits, she said.
Studies that found no benefits to neurological symptoms, frequently cited as the justification by infectious disease specialists for not recommending prolonged treatment courses, involved a small number of patients, Maloney said.
“This is a very complex illness,” she added. “We’re just scratching the surface.”
Steele is well aware of the risks of the treatments she started in January, but believes she has no alternative, given her declining health.
Last week, to give her body a rest, her doctor suspended the antibiotic treatment for a month. She alternates unpredictably from bursts of energy to debilitating fatigue that leaves her crawling on the floor of her home.
“I still have hope,” Steele said, although she worries that she will be unable to continue working her even greatly reduced schedule. Her son serves in the Marines on a naval base, so cannot be on hand to help.
She hopes her problems will alert people to the dangers of Lyme disease, and the need for better treatments.
“This disease has destroyed and taken everything from me,” she said. “I am fighting to get it back. I am fighting to help others not go through this as a patient advocate.”
Reporting by Patrick Springer.