Climb back from Lyme

Maine Sunday Telegram
Portland, ME
by Selena Ricks
1 Aug 2004

ONLINE RESOURCES:

www.mmcri.org/lyme /lymehome

www.ilads.org

UNDERSTANDING LYME

A BACTERIAL INFECTION that is spread by deer ticks, Lyme disease begins in the skin and spreads to the joints and nervous system. The disease can cause joint pain, heart problems, sleep disturbances, stiff neck, rashes, numbness and exhaustion. Most prevalent along the upper East Coast, the upper Midwest, Northern California and the Oregon Coast, the disease affects more than 16,000 people each year.

COMMON SYMPTOMS

MOST LYME VICTIMS develop a characteristic bull’s-eye rash within three to 21 days of exposure. Other indications are flu-like symptoms, fatigue, muscle and joint pain, fever, headache, chills, facial palsy, stiff neck and gastrointestinal problems

PRECAUTIONS:

Maine Medical Center Research Institute Lyme Disease Research Laboratory

WEST BATH — For a breathtaking moment, she raised her hands in triumph, in awe of what her body had done. At age 58, Rita Losee perched atop Mount Katahdin, the finish line of a solo adventure on the Appalachian Trail. Between March and August 2000, she hiked 2,167 miles from Georgia to Maine, undoubtedly some of the most incredible and satisfying months of her life.

Losee’s experience on the trail culminated decades of physical achievement and personal growth.

But the most grueling challenge for the champion triathlete, rock climber, motivational speaker and divorced mother of two lay ahead. Losee soon realized her life-affirming trek was the epitome of a so-called double-edged sword. Somewhere along the trail in the woods of the New Jersey-New York border on a day she wasn’t wearing her DEET bug spray, Losee contracted an unfortunate souvenir — Lyme disease, from the bite of an infected deer tick.

“I looked down at my leg and said, ‘Hmm, I don’t remember having a freckle there,’” recalled Losee, now 62. “It wiggled. I ended up pulling off about four or five deer ticks.”

Aware of the risk of Lyme disease but focused on her goal of completing the trail, Losee didn’t worry too much about the tick bites until she took a break from her journey to celebrate the Fourth of July at her summer home here.

“I woke up one morning and could hardly turn my neck,” said Losee. “I had unbelievable stiffness in my neck. And exhaustion.”

A career nurse, Losee knew she might be experiencing symptoms of Lyme disease. She immediately saw a local doctor and her diagnosis was confirmed.

What Losee didn’t know was that the infection would manifest into a four-year battle against excruciating pain and a test of her wits as she found herself caught in the growing medical debate over diagnosis and treatment.

Since it was first identified in the United States in 1975, when there was an unusual outbreak of arthritis near Lyme, Connecticut, Lyme disease has emerged as a major public health concern.

The disease was reported in Maine in 1986, and state health officials have seen an increase in cases in recent years. In 1999, 90 Lyme disease cases were reported in Maine. Last year, there were 175 reported cases.

Experts say Lyme-infected deer ticks have expanded their range deeper into Maine this summer.

WIDESPREAD DISAGREEMENT

The Centers for Disease Control and Prevention (CDC) and the National Institutes of Health support the belief that Lyme disease is easily diagnosed and quickly treated. But questions remain about how much Lyme disease is missed and how many cases of other illnesses are misidentified — and mistreated — as Lyme.

The International Lyme and Associated Diseases Society (ILADS), based in Maryland, contends that there are up to 5 million misdiagnosed cases a year.

They also claim the CDC’s standard tests often fail to identify the disease, missing 35 to 40 percent of cases.

The group also charges that the CDC’s standard for antibiotic treatment is too brief to provide a lasting cure for many sufferers, and may enable the bacteria to morph and thrive inside the body.

“There is an acute lack of information,” said Christi O’Connor, media representative for ILADS. “Chronic Lyme is treatable, but we don’t know if it is curable.”

Author Amy Tan recently became an advocate for ILADS after doctors affiliated with the organization diagnosed her with late-stage Lyme disease.

Tan, best known for writing “The Joy Luck Club,” suffered extreme pain, fatigue and even hallucinations over a period of four years and saw 10 physicians before the disease was identified.

Tan didn’t realize how tiny the tick could be — about the size of the period at the end of this sentence — and her rash never fit the standard description.

ILADS board member Dr. Daniel Cameron, of Mount Kisco, NY, chief author of new Lyme disease treatment guidelines published by the group, hopes the new recommendations will increase doctors’ awareness of Lyme symptoms and treatment.

“The hope is (doctors) will include patients presenting with poor memory, concentration and fatigue as having Lyme instead of only relying on the rash,” said Cameron, who has been treating Lyme patients for 15 years. “I think a lot of people do quite well if you just treat them sooner, and if you treat them for longer than 30 days.”

Dr. Rob Smith, an infectious disease specialist and researcher with the Vector Borne Disease Research Laboratory at Maine Medical Center, said studies show 80 to 90 percent of patients with Lyme do have a tell-tale rash, and most early cases can be treated within 10 to 21 days with oral antibiotics.

“There have been no benefits demonstrated in peer-reviewed literature for extended courses of antibiotics beyond the usual two-week time course,” said Smith. “In general, the feeling is that this is a disease that responds well to treatment.”

‘ROOM FOR MORE RESEARCH’

Smith said that there is room for more research into what causes persistent symptoms in people who have been treated for Lyme, and also Lyme’s effect on the immune system.

“There is frustration for people who had Lyme and have fatigue or joint pain after treatment,” said Smith.

Losee does not recall any rash. “Although, I was covered in mud up to my knees, so I could not have noticed,” she said.

After her initial doctor’s visit, Losee was given a two-week prescription of doxycycline, the standard antibiotic treatment for early Lyme disease.

The doctor assured her that if her treatment erased her symptoms within 48 hours, after two weeks her Lyme disease would be cured and she could resume the remaining leg of her hike from Massachusetts to Maine.

“As far as I was concerned, that was the end (of the Lyme). I was done with it,” said Losee.

Losee was able to complete the Appalachian Trail. But once the thrill of her accomplishment wore off she still had the same stiffness, joint pain and fatigue.

After realizing that she was feeling more than the expected exhaustion from her excursion, Losee returned to the local doctor for another blood test. Her results showed she still had Lyme disease, and she was put on three more weeks of doxycycline.

Summer was over and Losee returned to her home at the time in Boxbury, Massachusetts, where she juggled roles as a motivational speaker, writer and consultant. When she stopped using her treatment, her pain and exhaustion resumed, so in late fall Losee saw a Lyme disease specialist in Massachusetts.

“He drew blood, and said to me, ‘You don’t have Lyme disease. You have chronic fatigue syndrome.’ And he stopped my antibiotics,” she recalled.

Losee stayed off the antibiotics she had been taking to treat her Lyme, even though she slowly began to feel worse over several months.

On July 30, 2001, Losee felt well enough to climb Mount Monadnock in New Hampshire. The following day she spent on the couch, achy and unable to move. “That’s when I said to myself, ‘This is not chronic fatigue, Rita,’” recalled Losee. “This is still Lyme.”

She began extensively researching Lyme disease and contacted a Lyme support group in her area, where she was given the names of two Lyme disease specialists in Connecticut. Dr. Steven Phillips had a six-week wait for new patients, while Losee would have to wait 12 weeks to see Dr. Bernard Raxlen. She made an appointment with Phillips, and in the meantime asked her primary care physician for an immediate prescription of doxycycline.

This time, the antibiotics gave Losee a severe reaction, which resulted in bouts of extreme pain in her face muscles. She was forced to halt her work as a motivational speaker and consultant as her health continued to deteriorate.

ROCKY ROAD BACK

In August 2001, Losee decided to return to nursing part-time, but was in so much pain during her first day of orientation that she could not go back.

A month later, Losee had a friend drive her to see Dr. Phillips in Ridgefield, Connecticut. He prescribed her with oral antibiotics, Tetracycline and Biaxin.

By November 2001, Losee felt her new treatment was working well enough to return to nursing again.

When she was on the treatment, she felt better, but when she stopped taking the drugs for a few weeks, she developed pain so bad that she became severely depressed. Last fall, her thoughts turned to suicide.

“I was starting to think there was no return on my investment for breathing,” she recalled.

Negative thinking was not something Losee was known for — she finished the Hawaii Ironman triathlon at age 46, has written books and climbed the 19,350 foot Mount Kilimanjaro.

“Before Lyme, my body would do anything I asked it to,” she said. “After Lyme, it was like I was a cadaver, dragging my own body in a body bag.”

In January 2003, Losee semi-retired to her home here, continuing to work as a nurse in Everett, Massachusetts, for six days at a time followed by eight days off.

Last October, she went to Dr. Raxlen’s office and was given a 90-day prescription for an IV of the drugs Mepron and Zithromax. The aggressive treatment was ultimately extended to six months.

Losee ended her use in May, and she felt well enough to run a 5K road race in June.

“That was probably even better than being on the summit of Katahdin,” said Losee. “It was incredibly meaningful to do that again.”

Losee says if she is ever diagnosed with Lyme again, she will hire someone to thoroughly research the diagnosis and ever-evolving treatments for Lyme.

“People don’t really recognize what a devastating disease it is,” said Losee. “A lot of people with Lyme are unable to work, and therefore have no health insurance. Or their insurance decides that chronic Lyme doesn’t exist or is something else, and they are denied coverage.”

While Losee says she is lucky that the majority of her medication and doctor’s visits were covered by her health insurance, her visits to the Connecticut specialists were not covered and she estimates that in 2003, she spent $12,000 from her own pocket on expenses related to her Lyme disease.

Losee’s story was recently published in a book called “Conversations on Success” (Insight Publishing). She is resuming her work as a motivational speaker and consultant, and she has plans to get back in shape and climb more mountain trails.

Staff Writer Selena Ricks can be contacted at 791-6451 or at: sricks@pressherald.com

Beth Murphy, staff researcher, contributed to this story