Ticks are often found in brush, leaves and bushy areas. Lyme is transmitted by deer ticks which are not much larger than the head of a pin. Photo by Hannah Abelbeck

by Suzan Erem

In the summer of 1998, Emily Steffensmeier came down with a strange and nasty flu, an overwhelming fatigue and shortness of breath.

Steffensmeier had just graduated with a degree in psychology and medical humanities and returned home to State College for a new job. She was in her early 20s but she felt decades older. Even after the flu-like symptoms passed, she felt worse than ever, so she asked local doctors what was wrong with her.

“You’re anxious and depressed,” one told her.

“You’re not ready for the real world,” another said.

Get a job, get a boyfriend, get some exercise, others told her.

Steffensmeier had to resign from her new job. She could barely pull herself out of bed. Her joints were inflamed.

“It’s fatigue on a whole different level than I’ve ever known in my life,” she said. “You’re like waiting for wet cement to just move…I’m just trapped in this body.”

After six years of traveling around the country to specialists, Steffensmeier met a doctor from a respected medical university who ran an extensive battery of tests. The doctors at this university are not known to jump quickly to a Lyme disease diagnosis, she said, but when they removed Steffensmeier’s gall bladder and her condition worsened, her doctor finally concluded it was Lyme disease.

“He was amazing, amazing, amazing!” Steffensmeier said. “I couldn’t ask more from him.”

Yet Steffensmeier asked that Voices not print his name or his institution for fear that medical examiners would come after him for medical misconduct. Diagnosing some Lyme cases can get a doctor in big trouble these days, and many keep what they know under wraps.

Ann Corson, a medical doctor in Cochransville, Pa., learned about the insidious nature of the disease when she had her own personal experience with Lyme.

“I consider myself a good diagnostician and it took me two years to figure out why my only child was dying,” Corson told Voices. “That doesn’t mean there’s something wrong with me; it means there’s something wrong with my education.”

Corson said she had removed a tick from the ear of her 14-year-old son and done what her training told her to do: watch and wait. (Lyme is transmitted by deer ticks which are not much larger than the head of a pin.) But no rash and no flu-like symptoms appeared. She thought he was in the clear. But for the next two years, this normally healthy boy complained of pain, illness and fatigue. When Corson finally learned about long-term Lyme disease, she hit the ground running, calling all the experts, launching a physician training program and opening up her practice to Lyme patients. Soon she had a waiting list 18 months long and had to stop taking new patients.

Gail Sheffer displays some of the many medications she has been prescribed for treating long-term Lyme disease. Photo by Megan Sheffer

Gail Sheffer still travels two hours from Harrisburg to Corson’s office for every appointment.

Sheffer, her husband and her two daughters have all had Lyme, but only she and her husband are still dealing with it. Their daughters have been cured.

“We have several co-infections; not only Lyme but a few other tick-borne diseases were found. There’s one that seems to be troublesome for me,” Sheffer said.

Sheffer used to hold down a full-time job in human resources for the Navy. Now she’s on disability. Her husband is self-employed and works around his bad days, she said.

Like Steffensmeier and many others, Sheffer’s initial tests for Lyme came back negative.

“The two doctors I went to tested me for Lyme two times, sent me to a rheumatologist who did a full work up, but my blood work came back negative for Western blot,” Sheffer explained. Western blot is a more advanced blood test for Lyme. “I asked, ‘What do you think about Lyme?’ and he said, ‘You can’t have Lyme; you don’t have any swollen joints.’ That’s when I knew he didn’t know what he was looking for.”

Sheffer did her own research on the Internet and narrowed the possibilities down to lupus or Lyme. Then she found a support group in Gettysburg.

“When I told my story and my symptoms, they said, ‘You sound just like us,’” she said of members of the group. “Then I felt like, ‘Whew, somebody has a clue.’”

Then there is Mary Wagner of Huntingdon County. She and her husband Ron knew something was wrong when she woke up one morning with balance issues and slurred speech. They thought she had had a stroke.

Ron said they also suffered through many visits to many doctors, sometimes painful testing and many misdiagnoses.

“I’ve tested you for everything I can test you for,” one doctor told his wife. “And I’ve concluded it’s all in your head. You need to see a psychiatrist.”

Ron said it was the psychiatrist who took Mary off of antidepressants and sent her to a new neurologist who had her tested for Lyme. That was a year and a half after her symptoms surfaced.

We’re No. 1

In 2009, Pennsylvania ranked first in Lyme disease cases and has consistently ranked among the top five states in recent years, according to the Centers for Disease Control. These stories of multiple doctors, diagnoses and treatments over many years are the stories of thousands of people, many of them Pennsylvanians. The numbers continue to rise.

Patients describe symptoms of long-term Lyme that include intense pain roaming from joint to joint within hours, pain in the larger joints, a brain fog, abdominal pain, problems swallowing, a tremendously sore neck and a variety of vicious headaches.

Sheffer added panic attacks and stabbing or stinging pains in fingers and feet. At the time, she attributed some symptoms to menopause, the rest to getting older, but they just began to pile on.

“When I got treated the panic attacks went away,” Sheffer, who is still taking antibiotics and anti-malarial drugs, said. “My energy level has come back, though I did relapse in 2008, it’s still much better when it was in 2004 when I was sick and undiagnosed. I have less pain, though I still have pain. I still get some headaches but not as many, and the night sweats have ended.”

Lyme is often misdiagnosed as a psychosomatic disorder, Chronic Fatigue Syndrome, mental illness and in its advanced stages, after it has attacked the central nervous system, Multiple Sclerosis. In fact, the moving target of symptoms caused Mary Wagner’s doctors to blame Lyme disease long after, it seems, Lyme was no longer the culprit. Mary died in 2009 awaiting tests for an unrelated medical condition. In her case, opposite of most long-term Lyme patients, Lyme disease contributed to her death because doctors refused to consider anything else, her husband said.

In 2008, the CDC received 35,000 reports of Lyme disease cases, a 30 percent increase over the previous year. But the CDC admits that the number of unreported Lyme cases could be six to twelve times that figure.

Defining Lyme

Why there are so many unreported cases begins to tap the root of the problem.

Many medical doctors treat most infectious diseases in the United States based on standards and definitions determined by the Infectious Diseases Society of America, a well-established group of academic researchers from around the country. Health insurance companies, for one, often use IDSA guidelines to determine what diseases and treatments they will cover.

The IDSA has determined that Lyme disease is “hard to catch and easy to cure.” The researchers claim all Lyme disease cases begin with a tick bite that gives the patient a bull’s eye rash (white near the center with a red ring around it) that can be treated with two to four weeks of antibiotics and cured.

But many patients have never seen a tick or a rash.

“The more people that join our support group, the more say I don’t know when I was bitten, I never saw the tick, I didn’t get a rash,” said Steffens, who founded the group and has won a national award for her advocacy. “But then they’ll start saying, ‘You know about two years ago, I had a swollen knee or this wrong or that wrong.’ They can remember a certain time before they really got sick that something started happening.”

Doctors with clinical, or patient-based, experience are saying they are hearing the same thing from their patients around the country. Additionally, they say this Lyme often goes undetected and the longer it does, the more damage it inflicts. They say long-term Lyme requires multiple years of heavy doses of antibiotics to begin to reverse the damage. But doctors who treat patients this way risk professional alienation, high expenses and even the loss of their licenses.

“Here we are in the worst state in the nation and doctors are misdiagnosing it all the time,” said Corson. “They have patients coming in with typical symptoms of co-infections and they don’t even know the co-infections exist. I came from the same Ivory Tower background as the IDSA doctors and the only reason I figured it out was because I opened my mind to a nonmedical person, and my son was dying.”

After medical boards began charging high-profile doctors with inappropriate treatment, a second group of doctors grew into an organization called the International Lyme and Associated Diseases Society. Their clinical experience tells them that the bacteria that causes it is now showing up disguised and paired up with other similar bacteria, generating new symptoms that overlap with even more illnesses. Many of their patients never saw a bull’s eye rash, the supposed tell-tale sign of Lyme, experience supported by a 2003 study published in the American Journal of Medicine that concluded only 35 to 59 percent of Lyme patients get the rash. And many were not diagnosed early enough for a month of antibiotics to be effective. They treat their patients instead with two or three years of antibiotics, and if they stop treatment early, they see symptoms return.

William Ayoub, a rheumatologist at Geisinger Medical Center in State College, sounded astonished at the idea of treating a Lyme patient for years with antibiotics. He said such long-term treatment is unnecessary.

“You have to take every situation based on the facts that are there,” he said. “I have never found that I have needed to treat anybody for more than a month for Lyme disease. The bacteria is killed, but sometimes the person can still have a problem after the spirochete is gone.”

Emily Steffensmeier receives her intravenous antibiotic treatment from her mother, Renee Steffensmeier. Emily is on a multiple-year antibiotic treatment for Lyme disease. Photo by Kelsey Stratton

Steffensmeier told Voices one intravenous antibiotic treatment can put her out of commission for three days. Her mother, a retired Penn State professor who works part time at Schlow Library, cares for her at home, while her father, who still works at Penn State, provides for her healthcare costs above those covered by Medical Assistance. This last summer she was better than she had been since 2005, she said, but success was defined by small victories.

“I just noticed how I could be on a computer and write a blog and be focused on it,” Steffensmeier said. “I could talk on the phone and not be totally exhausted. It was an improvement in energy, focus. I could sit up longer, could do more on my own without getting exhausted.” Her mother would push her around in a wheelchair in the local park, and that would be a good outing.

But her stomach hurt all the time, so her doctor pulled her off the heavy-duty antibiotics to see what would happen.

“Now I’m just at home all the time. So that break, going off of them, that’s when I could say, ‘Oh wow, I really was making progress.’” Steffensmeier is back on the treatments, but she was hesitant to name the local doctor who is monitoring her treatment for fear the doctor would be targeted.

Sheffer defines her progress in similar small steps.

“It took me three years before I got better and could get off meds,” she said. “Then I had almost a whole year being symptom free. I could do everything I had been able to do. It meant everything to be able to wash my car, mow the yard and then come in and make dinner. [Before then] I used all my energy for menial things like taking a shower and making food.”

The politics

The passion on both sides of the debate is palpable as this fight enters its second decade. ILADS, the long-term Lyme disease group, has waged a tireless battle to have the IDSA definition rewritten. Their efforts hit another roadblock April 23 when, as reported by the Hartford (Conn.) Courant, the IDSA reiterated its definition of Lyme, limiting it to short-term antibiotic treatment, which in practice excludes many patients’ current treatment program from being covered by health insurance.

At issue is the very credibility of the IDSA, which activists say holds much sway over the medical establishment. A 2001 Lyme Disease Association report carefully details extensive conflict of interest potential in the development of a Lyme vaccine. Included in a long list is the Penn State Research Foundation, owner of a patent for a vaccine delivery system estimated to be worth $900 million per year.

According to the 186-page report, a lively debate occurred in 1994 at an important meeting of experts in Dearborn, Mich. A close vote resulted in the narrow definition of Lyme that exists today as standard, a definition that Lyme activists say impacts the profit-making power of Lyme vaccine developers. If everyone could agree on what Lyme disease was, then everyone could agree when a successful vaccine was eventually developed for it. But if Lyme continued to morph into more and more complicated copy-cat symptoms, no one could ever make a vaccine that would convince the FDA to approve it. Worse, if long-term antibiotics with expired patents could cure the worst cases, millions of dollars in vaccine research and development would have been wasted and future profit potential would disappear.

“[Pharmaceutical company] SmithKline Beecham, the FDA and CDC met to decide upon a viable case definition for Lyme disease, one that would enable their data to have meaning and permit their clinical trials to move forward, ultimately passing review at the FDA,” the report states. “A stringent serological definition of Lyme disease, one that seemed to settle, once and for all, who had Lyme and who did not, was essential for products to be approved.”

The vaccine industry is estimated to be worth more than $500 million to $1 billion per year in the United States alone, and charges of conflicts of interest have only increased over time.

The 2009 award-winning documentary Under Our Skin reported that 11 of the 12 IDSA members who set the guidelines in 2000 and 10 of the 14 members who set the more restrictive guidelines in 2006 “held direct or indirect (through their academic institution) interest” in a Lyme vaccination, according to a background paper from the California Lyme Disease Association, one of the leading trackers of the issue. (One Lyme disease vaccination was on the market for a few years until 2002, but was taken off the market, the company said, because it wasn’t making money, others say because it was harming people.) Six of the members served on both panels, and they either formerly worked for the companies now developing vaccines or their universities hold patents to some part of the vaccine. Long-term Lyme activists claim this is proof the IDSA has reason not to acknowledge that long-term antibiotics treatments work.

When the IDSA reissued the tighter definition and treatment guidelines in 2006, the conflict-of-interest smoking gun was enough for Connecticut’s Attorney General Richard Blumenthal to launch an antitrust investigation. To settle it, the IDSA agreed to set up a new, more transparent committee to review the guidelines by Dec. 31, 2009, a deadline it missed. This January the IDSA was caught red-handed manipulating the vote to skew it toward maintaining the status quo, violating the settlement agreement with the attorney general.

In a letter dated Feb. 1, 2010, Blumenthal related his staff’s review of the minutes of IDSA meetings that showed this manipulation.

“My staff discovered that the review panel failed to conduct the principal voting required by the agreement and the AP [Action Plan] on whether each recommendation in the 2006 Lyme disease guidelines was justified by the medical/scientific evidence,” Blumenthal wrote in his letter. That vote, he explained, would have changed the guidelines, because only half of the group voted to maintain status quo and a supermajority was required.

Then, in a setback for Lyme activists, the IDSA announced April 22 that the panel had voted unanimously that its 2006 guidelines were based on sound science. Its report said that the overwhelming testimony and documentation received during the panel’s review was “by its nature uncontrolled and highly subject to selection and reporting biases” and that “only high-quality, prospective, controlled clinical trial data demonstrating both benefit and safety will be sufficient to change the current recommendations.”

Prosecuting heretics?

Doctors who say long-term Lyme exists and is treatable with antibiotics continue to be under attack. One of the heroes of the effort is Charles Ray Jones, an 80-year-old practicing pediatrician who is one of the few in the country that Lyme patients call a “Lyme literate M.D.”

Jones was brought up on charges in front of the Connecticut Medical Examining Board (CMEB) for misdiagnosing tick-borne diseases in three children. He has treated more than 10,000 in his career, according to his attorney. His appeal in February resulted in, among other penalties, Jones being fined $10,000, twice as much as doctors who had been charged with violating more severe ethics and practices, according to Kris Newby of underourskin.org who sends out regular updates on such cases.

“Last year the medical board punished 43 physicians for serious charges such as substance abuse, sexual misconduct, mental illness and negligence; not one of these physicians received a fine larger than $5,000,” Newby wrote, adding that none of the children Jones treated were harmed.

The movie “Under Our Skin” documents other doctors who have lost their practices due to such prosecution, and still others are feeling the chilling effect of those prosecutions.

In Pennsylvania, no doctors have been prosecuted yet, Corson said.

“If they want to come get me they can come get me and there’s nothing I’m going to do about it,” she said. “All it’s going to take is one patient complaining to the medical board about me, but I’m not going to stop speaking out.”

Ayoub said he was not aware of doctors who’ve been brought up on charges for long-term antibiotic treatments, but was aware of the treatment.

“There are certainly folks out there who seem to be treating everybody who walks in their office with long term antibiotics,” he said. “Of course the potential problem here is that it’s fine to treat people, and that’s good, but we certainly shouldn’t over treat people. Long-term antibiotics if you don’t need them can be hazardous. You want to save every medicine for when it’s needed.”

Ayoub said he relies on guidelines from a number of sources including the American College of Rheumatology, as well as “standard texts and experts.” He was not immediately familiar with the acronym “IDSA.”

The costs

As the legal and medical board battles rage on, patients continue to suffer, emotionally, physically and financially.

For one, they pay the bills health insurance companies won’t so long as the IDSA’s definition of Lyme stands. Steffensmeier said that even with medical assistance, her parents have paid out “thousands and thousands” of dollars in medical costs. Sheffer estimated her out-of-pocket costs are beyond $50,000 for her family. She’s thankful her daughters were diagnosed and cured quickly, but the bills continue to pile up for her and her husband.

Corson looks at the bigger picture.

“If you look at the medical costs of treating someone three to five years opposed to taking care of a disabled person in the long term it costs a lot less to treat them for those few years,” Corson said. “But CEOs of these hospitals don’t think in the long term, they think in terms of this year, next year. We as a society have to start thinking in the long term.”

On the political front, Sheffer said she saw hope when a local state representative appointed her to the state Lyme Task Force, but that hope faded fast.

“I’m the only advocate, and we have not met since January ‘08,” she said. “They wanted testimonials from experts, and then they did nothing.”

Corson has testified twice in Harrisburg she said, and repeated efforts to pass Lyme-related legislation, including education about avoiding the disease, have passed the House, but failed in the Pennsylvania Senate Banking and Finance Committee, she said. Her testimony, taped by public broadcasting, never aired either, she said. Yet when she and Sheffer appeared on public broadcasting’s Smart Talk show to discuss Lyme, the producer said he had never in seven years received so many requests for a copy of the show.

Corson, whose son is now pursuing his master’s degree overseas, continues to give talks around the country, maintain her independent practice and connect daily with her colleagues via a listserv they have set up to stay on the leading edge of Lyme disease research.

“I decided I couldn’t let other mothers go through this,” she said. “I was lucky enough that I was able to call other doctors and take care of my son, but how many other mothers suffer every day because doctors won’t believe them?”