Christine Behlmer completed a half-mile walk around her mother’s Queensbury neighborhood recently. It might not seem like much for a 29-year-old swimmer and long-distance runner, but it was a cause for celebration.
“I wanted to cry,” said her mother, Elaine.
For the past year and a half, Christine has suffered from chronic Lyme disease, the illness caused by the spirochete Borrelia burgdorferi transmitted to humans from the female black-legged tick. It can lead to lasting rheumatologic, neurological and psychiatric issues.
Christine was proactive in seeing a doctor right away when she felt ill. Unfortunately, an effective course of treatment wasn’t started until a year later when the bacteria had already wreaked havoc on her body, derailing her life.
According to a new report from the Centers for Disease Control, Lyme disease affects 300,000 Americans each year — 10 times more than was previously thought. It is the most common of all tick-borne illnesses in the nation.
A recent state Health Department report said in the past 13 years, Lyme has been listed as the cause of death for nine New Yorkers living outside of New York City.
Christine and her family have been on an exhaustive, frustrating and expensive journey to regain her health, but they are grateful she finally found a physician who specializes in handling Lyme disease.
“This is an epidemic and it is affecting a lot of people in upstate New York,” Christine said. “We’ve seen that a lot of doctors in this area who don’t know how to treat Lyme. A lot end up in the situation I am, where it’s chronic because they didn’t get proper treatment.”
Drugs and diagnoses
Christine, a human resources specialist at GlobalFoundries in Malta, used to get up at 6:30 in the morning, work all day and return home at about 5:30 p.m. She would run three or four miles most evenings. On weekends, she’d cover seven or eight miles.
In the spring of 2012, she hiked several times with friends in Poughkeepsie and Danbury, Conn.
Christine said she started feeling tired all the time, even though she had gotten plenty of sleep. She had pains in her joints and felt like she had the flu.
“I wasn’t sure what was going on. I thought maybe I had allergies, maybe I’m a little sensitive to the pollen,” she recalled. “Maybe I did get sick, but why am I having this pain in my joints?”
She went to her primary care doctor. He didn’t perform any tests but thought perhaps she was overdoing it. He advised her to take a break from running.
Her symptoms continued, though, so she went to an orthopedic doctor to see if she had fractured a bone. Multiple MRIs showed nothing, so she was sent to a physiatrist, a rehabilitation doctor, to determine if there were problems with her muscles and tendons. Again, nothing was found.
Christine was feeling worse. She had relocated from Connecticut to take the job in Malta but still hadn’t found an apartment. She decided to stay temporarily with her parents in Queensbury.
By August, her pain had traveled up her spine to her head, and her neck was stiff. She left work early one day because it got particularly bad. She could hardly walk to her car to drive to an urgent care center in Malta.
There, the doctor ran a test for Lyme disease, which came back positive. She was started on a one-week dose of Doxycycline, an antibiotic used to treat bacterial infections. She was out of work for the week.
She was advised to follow up with her primary care physician, which she did, but still didn’t feel better after finishing the medicine. The doctor prescribed a three-week dose of Doxycycline, but she still saw no improvement.
Christine said the doctor told her even though she tested positive for Lyme disease, he doubted she really had it because her symptoms would have gone away.
“He said all the guidebooks and all the treatment he had ever heard of said Doxycycline was what people would respond to, and usually people get that bull’s-eye rash,” she said.
Christine never removed a tick from her body, nor did she develop a bull’s-eye rash.
She took a leave of absence from her job in September. Her doctor suggested she start six weeks of physical therapy, and even though she didn’t think it would help, she followed his advice. By November, she wasn’t any better and needed to take anti-inflammatory medication for her pain.
During her physical therapy, Christine received cortisone injections in her back, which, though they didn’t help greatly — she was still plagued by fatigue and pain — enabled her to return to work in December.
By mid-March, her previous gains were lost. Her pain shot up to a point that it was worse than the summer before. She began taking the narcotic Oxycodone, because she was in “agony.”
It was nine months after her initial symptoms, and her mother was fed up.
“She’s not getting better, she’s getting worse,” Elaine said. “Let’s start all over again.”
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Christine made an appointment for a referral from her primary care doctor but saw a physician’s assistant instead. The PA repeated the original blood tests for Lyme disease but added a rheumatoid arthritis screening. Both came back positive.
An acquaintance from church had gone through his own bout with Lyme and gave Elaine the name of a rheumatologist in Albany.
At about the same time, the family heard about a Lyme disease specialist, Dr. Daniel Cameron, in Westchester County. Christine saw him for the first time in May.
What finally worked
Cameron began including Lyme disease cases in his primary care practice 25 years ago, after treating three patients who developed the illness.
The Behlmers drove three hours to his Mount Kisco office. The initial visit cost $750, and Christine’s medical insurance did not cover any of it.
They were “desperate” for answers and couldn’t be concerned with cost, Elaine said.
Cameron told Christine people are likely to respond to Doxycycline only within the first four weeks of infection, but she hadn’t received her first dose until three months after her initial symptoms.
Christine was prescribed a different antibiotic, Zithromax, and told to return every four weeks. She was tested for co-infections, which can occur if ticks are infected with more than one disease-causing pathogen, and she was diagnosed with bartonella, a pathogenic bacteria that can cause headache, fever, fatigue and poor appetite.
Through the rheumatologist, Christine underwent prolotherapy — an injection of lidocaine and sugar water — that is thought to help tendons and muscles repair themselves.
At July’s visit, Christine still wasn’t feeling well, even after Cameron added a second antibiotic, Ceftin, but he told her not to get discouraged.
Meanwhile, the rheumatologist recommended cold laser treatments that would break down the bacteria in her system and help the antibiotics work. She had five sessions in three weeks and began having less pain by mid-July.
The last part of July, however, Christine relapsed for three days and felt worse than ever.
But the relapse was a good sign, Cameron said. She had experienced a Herxheimer, or “herx,” reaction, in which the body responds to ridding itself of toxins.
“The body has had the bacteria in it for so long that now that the antibiotics are finally starting to do something, the body reacts to the change,” Christine said. “You get worse before you get better.”
Since then, Christine has gradually been feeling less joint pain.
The antibiotics, however, have caused stomach problems, so she now takes a probiotic drink of fermented tea with enzymes, vitamins and antioxidants that help to keep her digestive system working.
Her diet is limited to meat, fish and vegetables. She avoids sugar because it feeds bacteria, she said.
Christine and her mother are cautiously optimistic.
“Each time she takes a couple steps forward, we end up going back 10. That seems to be the nature of the disease,” Elaine said.
Elaine estimates the illness has cost them $10,000, with visits to several doctors to get a correct diagnosis, monthly trips to Cameron’s office, laser treatments and prescriptions. She is hoping insurance companies will soon begin covering more expenses associated with treatment for Lyme disease.
Recently, State Sen. Elizabeth Little, R-Queensbury, was appointed co-chair of a new Senate Lyme disease task force that will examine federal and state efforts for prevention, diagnosis and treatment, and recommend a legislative action plan.
Little said in a news release she is hoping a vaccine will be developed to prevent infection.
Meanwhile, Christine feels like she’s getting her life back. She sees other patients in Cameron’s waiting room and is thankful she hasn’t had some of the devastating effects from the disease they have, like a locked jaw.
She wants to be finished with all antibiotics by March.
She is now living in an apartment in Saratoga Springs. She doesn’t expect to run road races again because she tires easily, but she hopes eventually to take an occasional three-mile run or at least more walks around the block.
“I just want to get up in the morning and not be in pain at all,” Christine said.