Karen Hartenstine was describing the job she'd done before going on medical leave several weeks earlier.

She worked at the Navy supply depot in Mechanicsburg, assisting the "command science advisor." Her duties included organizing meetings, maintaining his calendar ...

She paused, face clenching in frustration. Then she abruptly lowered her head, clutched the back of her neck and began sobbing.

"I can't remember! Jesus!"

Her husband, Don Hartenstine, comforted her as she regained her composure and continued describing her battle with Lyme disease.

For years, she suffered from insomnia, depression, joint pains and ringing in her ears. Ultimately, the mental lapses drove her to go on medical leave. She'd be at work, and suddenly realize that she couldn't remember the name of a co-worker, or the contents of an e-mail she was writing.

Hartenstine, 58, of Fairview Township, is going through a controversial treatment involving prolonged use of antibiotics. The medical establishment doesn't consider it valid, saying extended use of antibiotics could do more harm than good.

Some doctors who treat what they call chronic Lyme disease fear they could lose their licenses. But many people in a nationwide network of Lyme disease patients maintain it's the only treatment that works for them.


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Lyme increasing in area

The federal Centers for Disease Control and Prevention reported nearly 30,000 new cases of Lyme disease nationwide in 2007, the last year available.

Pennsylvania has one of the country's highest rates of Lyme disease, with the state Department of Health reporting 3,828 new cases in 2007, 293 of which were from York County.

County Commissioner Chris Reilly recently announced that he contracted the disease, and took a week of medical leave to get treatment.

Karen Hartenstine of Fairview Township still enjoys working on the garden that surrounds her home. But after her diagnosis of Lyme disease, she s careful
Karen Hartenstine of Fairview Township still enjoys working on the garden that surrounds her home. But after her diagnosis of Lyme disease, she s careful about not getting tick bites. Hartenstine is on a long-term antibiotics treatment that some Lyme disease sufferers say is the only way to get rid of the disease. But it s a treatment the medical establishment does not consider valid. (Daily Record/Sunday News -- Paul Kuehnel)

Lyme disease's status as a growing threat is pretty much the only point of agreement on the subject in America's medical community.

Among Lyme disease patients and the doctors who treat them, there are two basic factions.

On one side is the vast majority of the country's medical establishment, which goes by a series of guidelines that the Infectious Diseases Society of America has established and the federal Centers for Disease Control and Prevention have endorsed.

Those guidelines hold that Lyme disease is relatively easy to diagnose and treat. Two-to-four weeks of antibiotics will cure almost all cases, and a "chronic" form that comes back repeatedly even with treatment likely doesn't exist.

The other faction consists of thousands of Lyme patients nationwide, linked by regional support groups and Internet discussion boards, who claim the disease can also take a chronic form that hangs in for years and requires prolonged treatment with antibiotics.

Those patients accuse mainstream practitioners of denying necessary treatment to suffering people. They seek help from a handful of doctors they term "Lyme literate," who are also willing to prescribe the extended course of antibiotics.

They take long journeys from other states to see the relatively small number of Lyme literate physicians. Many say they end up paying thousands of dollars out of their own pockets because insurers won't cover it. They say they're out of other options.

Fearful of harassment

Dr. Ann Corson of Cochranville in Chester County is treating Hartenstine. Like many doctors who number themselves among the Lyme literate, Corson said she lives in fear of losing her license.

Spokesman Charles Young for the Pennsylvania Department of State, which includes the State Board of Medicine, said that the process of taking a practitioners' license includes a hearing before the board. That process begins only as the result of a complaint against a physician. Without a complaint, use of a controversial treatment method wouldn't be enough in itself to get a license revoked, Young said.

As with most of the Lyme literate physicians, Corson's patients tend to seek her out after learning of her practice through word-of-mouth or the thriving online Lyme community.

After three weeks on antibiotics, County Commissioner Chris Reilly said he feels much better, if a bit sluggish. Here, he watches his son William s
After three weeks on antibiotics, County Commissioner Chris Reilly said he feels much better, if a bit sluggish. Here, he watches his son William s basketball team at Mazie C. Gable Elementary School in Red Lion. (Daily Record/Sunday News -- Jason Plotkin)

Corson said she's worried that insurers or other health practitioners will file complaints to harass her, which she said has happened to scores of physicians such as herself over the years.

"That's par for the course," she said.

But Corson is certain that chronic Lyme disease exists and requires a long-term course of antibiotics as treatment. Her own son's experience with the disease convinced her.

Pat Smith, president of the New Jersey-based Lyme Disease Association, advocates for patients who believe they have chronic Lyme disease. Smith said that in addition to their willingness to prescribe long-term antibiotics, the Lyme literate physicians are also willing to render a clinical diagnosis. That means they'll diagnose on the basis of symptoms and medical history.

The Infectious Diseases Society guidelines call for test results showing evidence of the Lyme disease bacteria in the blood. Activists such as Smith consider the clinical diagnosis to be particularly crucial in light of their argument that standard testing for Lyme disease is highly inaccurate.

Many of the medical practitioners and patients in the chronic Lyme camp also contend that an agenda underlies the mainstream dismissal of chronic Lyme diagnosis.

Pennsylvania state Rep. Merle Phillips, R-Sunbury, has tried repeatedly to introduce legislation requiring insurers to cover chronic Lyme disease, only to see it bottled up in committee. He blames lobbying by the insurance industry, which he believes is reluctant to pay for a course of treatment that might take years.

The state legislature in Connecticut, where epidemiologists first identified Lyme disease in 1975, recently passed a similar measure.

In 2006, the Connecticut attorney general's office started an investigation into the Infectious Diseases Society of America, the organization that wrote the diagnosis and treatment guidelines that serve as the basis for insurers, alleging a conflict of interest among the doctors who drew up those guidelines.

According to the Connecticut attorney general's office, some of those doctors had ties to pharmaceutical industries, which stood to make a profit from developing a Lyme vaccine. And it's more difficult to get a patent for a vaccine if the pathogen in question adapts and changes, as doctors in the chronic Lyme faction claim.

As a result of that investigation, the Infectious Diseases Society agreed to have a different set of doctors reevaluate its guidelines. None of the doctors served on the previous panel. Another doctor who is a nationally recognized expert on medical ethics and conflicts of interest will serve as ombudsman.

Regardless of what the Society says, Corson intends to stick with the treatment that she considers appropriate.

"The whole reason medical society is being kept in the dark has to do with a small number of people who are profiting from it," Corson said.

Reilly hears from others

Reilly said he's still a little shaky, but feeling much better than he did last month when the Lyme disease first hit him. Then, he spent a week in bed, immobile with crushing fatigue and joint pain.

When he saw his doctor, he had the signature bull's eye-shaped rash that frequently accompanies Lyme disease.

Reilly said she got him on antibiotics right away, before the test came back, saying she was virtually certain it was Lyme disease and it was important to start the treatment. She told him he was lucky to be diagnosed early, Reilly said, because it could turn into a long-term problem if left untreated.

Reilly's doctor, who is part of Wellspan, declined to comment for this story. Barry Sparks, a spokesman for Wellspan Health, said the company subscribes to the Infectious Diseases Society guidelines, but doesn't dictate treatment to doctors in its system.

Since he went public with his illness, Reilly said, he's heard from many people in the community who've experienced it themselves or through a family member. He wants to make more people aware of it.

"Apparently I'm a member now of a large fraternity that I'd prefer not to be in," Reilly said.

Doctor dismisses "pseudo science"

Sometimes it's non-Hodgkin's Lymphoma. Sometimes it's Parkinson's disease. Sometimes it's simply sleep apnea, and that's why the patient has been walking around in an exhausted fog.

Dr. Paul Auwaerter, clinical director for infectious diseases at Johns Hopkins University Hospital, has a whole list of such conditions, all of which turned out to be afflicting patients of his who thought they had chronic Lyme disease.

"I think the criteria is a bit too loose by these doctors who consider themselves Lyme specialists," Auwaerter said.

Yes, Lyme disease is on the rise, Auwaerter said. He's even come to believe that a very small number of people who have it may not respond to the standard two-to-four-week course of antibiotics, though he still believes that a long-term course will do nothing for them.

The problem, Auwaerter said, is that Lyme has taken on a certain "disease du jour" quality. And believers in the chronic form ascribe such a broad range of symptoms to it that they can chalk up virtually any physical or psychological problem to Lyme disease.

Sometimes the Lyme-causing bacteria have been killed off, but patients are still feeling the after-effects and wrongly ascribe them to a chronic form of the disease, he said. Regarding patients who claim they've recovered after extended treatment with antibiotics, Auwaerter said he suspects that they're simply getting over the after-effects and would have recovered anyway.

Auwaerter is also with the Infectious Diseases Society of America. He dismissed the Connecticut attorney general's investigation as misguided, and its conclusions as a "smokescreen."

Administering antibiotics over a long period of time has attendant risks, Auwaerter said. They can kill off beneficial flora in the digestive tract. If they're administered intravenously, patients can develop an infection from the catheter.

But the biggest risk of wrongly diagnosed chronic Lyme disease, Auwaerter said, is that people may be denied treatment for a genuine problem.

"Patients are really buying into this pseudo science argument," he said.

Feeling hope again

For Kati Hempfing, the bad times were legion. They included grinding physical pain, debilitating nausea, fits of screaming and crying, suicidal urges and even two stays in a psychiatric ward.

But in all of her years of dealing with Lyme disease, the worst moment of all came during a conversation with her family doctor.

She had seen a wide range of medical specialists who could find nothing specific wrong with her. She had taken numerous medications that did nothing for her.

Her family doctor told her that she would have to face an unpleasant truth. She might just be like this for the rest of her life.

Hempfing was 19 at the time. She cried for hours afterward.

"It shattered every piece of hope I had," Hempfing said.

Hempfing, 25, is another of Corson's patients. She still lives with her parents in Hanover.

She was a straight-A student and a cross-county runner in high school, and had been accepted at several colleges. Lyme disease knocked her life off-track, leaving her unable to go to school or hold a job.

These days, she still suffers the occasional mental lapse or twinge of anxiety. But the crushing depression and irrational screaming fits are gone, as are almost all of the physical symptoms.

The lengthy regimen of antibiotics has been physically taxing in itself at times.

Still, neither Hempfing nor her parents have any doubts that it's made a profound difference. She figures the challenges aren't over by any means, but now she has hope.

"I have a lot more good days than bad days now," she said.

ABOUT TICKS AND LYME DISEASE

Here's a look at ways to help make sure you don't pick up a tick or get Lyme disease:

How do I protect myself?

  • Walk in the center of trails. Use insect repellent with DEET (on skin or clothing) or permethrin (on clothing), and wear long sleeves, long pants and socks.

  • Ticks are happy to crawl up the inside of your pant legs, so tuck your pant legs into your socks. If your socks (and clothes) are light-colored, you can spot ticks more easily.

  • Check yourself for ticks after being outdoors, even if in your own yard. Search your entire body. Use a hand-held or full-length mirror to see everywhere, especially:

    - Under the arms

    - In and around the ears

    - Inside the belly button- Back of the knees

    - In and around all head and body hair

    - Between the legs

    - Around the waist

    Remember that ticks can come into your house on clothing and pets. Placing clothes into a dryer on high heat effectively kills ticks.

    What if a tick bites me?

    If a tick is on your skin for less than 24 hours, you have an extremely small chance of getting Lyme disease. However, watch for signs or symptoms such as rash or fever, and seek medical help if they develop.

    How can I get rid of ticks in my yard?

    About 70 percent of people who contract Lyme disease catch it from ticks in their own yards. So . . .

  • Keep patios, play areas and playground equipment away from shrubs, bushes and other vegetation. Regularly remove leaf litter and clear tall grasses and brush around your home, and place wood chips or gravel between lawns and wooded areas to keep ticks away from recreational areas.

  • Chemicals, applied by you or a pest control expert, can work. For example, one springtime application of acaricide can reduce the population of ticks that cause Lyme disease by 68 percent to 100 percent.

  • Because deer are a main food source for adult ticks, keep deer away from your home by removing plants that attract them and putting up barriers that can help discourage deer from entering your yard.

    Sources: Centers for Disease Control and Prevention; University of Vermont Extension Department of Plant and Soil Science