For chronic Lyme disease sufferers, the medical system is as big a pain as the bug.
By Jeff Prince
A hardwood chair, desk, laptop computer, and picture window are familiar friends to Dawn Irons, who doesn’t do much more than sit at home and write these days.
“You can’t tell by looking at me now, but I was very athletic in high school,” she said, looking down at a body that’s grown heavier with years of inactivity.
Back in 1985, high school held such promise for the pretty and popular cheerleader and athlete. Things changed in her sophomore year, which marked the beginning of a bad dream she’s still trying to awaken from almost 25 years later.
She attended high school in Austin, but she spent summers and holidays in Springtown, northwest of Fort Worth, hunting, fishing, and camping at her grandparents’ ranch. She thought little about the occasional tick she’d find after those visits.
But at 16, she developed fatigue, aching joints, and headaches that made tumbling and jumping at cheerleading practice impossible. So she quit. Tennis and other sports fell next. She turned to writing to fill the void.
Her parents took her to various doctors, but they seemed to be chasing their tails when trying to diagnose Irons. Since she began to spend most of her time lying down, her parents moved her bed into the living room during her senior year so she could watch TV and be around the family. Depression loomed, as deteriorating health robbed her of almost everything she enjoyed.
That year, she missed almost 90 days of school. “I was in and out of the hospital,” she said. “One doctor said it’s either epilepsy or it could be a brain tumor. It’s my senior year and I’m thinking I’m going to die. I was mad at the world.”
All these years later, she’s still fatigued, sore, and inactive – and still writing. These days, though, her writing has a national audience. Her self-published Public Health Alert is a well-read source of information for people with chronic Lyme disease, the malady with which Irons was finally diagnosed.
A Dallas doctor made the call in 2003 but couldn’t provide much treatment or help – by then, she’d been infected for almost 20 years. In 2005, frustrated with the lack of information about chronic Lyme, she started the newspaper to spotlight a controversial disease that has confounded physicians, pitted the Texas Medical Board against doctors, and forced local patients to travel out of state to seek treatment.
Irons is convinced that her husband, Brad, and their three children are all infected with chronic Lyme. So several times a year they make the five-hour drive to Pineville, La., to see a doctor willing to treat patients for a disease that the mainstream medical community insists doesn’t even exist.
The nurse practitioner in Austin who used to provide treatments to the Irons family and many other Texas patients has since moved to San Francisco to escape oversight by the Texas Medical Board, which frowns on doctors who insist on diagnosing and often successfully treating a disease the board doesn’t recognize. Insurance companies don’t want to pay for expensive antibiotic treatments, pointing to treatment guidelines that say Lyme disease can be treated and defeated in a few weeks. Critics say those guidelines were written by doctors and researchers paid by insurance companies.
“Many doctors would treat chronic Lyme, but they are not going to give up their licenses to treat it or have some insurance company cripple their practice because the insurance company doesn’t want to pay,” Irons said.
Change is looming, due in large part to the nationwide release of a gripping documentary movie on the subject. It can’t happen fast enough for the thousands of people who live in constant pain from an ailment few understand.
Writers of The Simpsons were shooting for laughs when they wrote Lyme disease into an episode that first aired in 1991.
Miss Hoover: You see, class, my Lyme disease turned out to be psychosomatic.
Ralph: Does that mean you’re crazy?
Another Student: No, that means she was faking it.
Miss Hoover: No, actually, it was a little of both.
Eighteen years later, the scene prompted a rueful snicker from Dawn Irons – not really a laugh, but more like the sound people make when they snort to keep from crying. She knows what it’s like to be considered loony for claiming to have a mysterious illness.
The Simpsons clip is included in Under Our Skin, an award-winning documentary film released last year that exposes the clash of politics, science, and greed that leaves chronically ill patients twisting in the wind.
If you believe some researchers and doctors, chronic Lyme disease is a fantasy perpetuated by confused or greedy physicians and trumpeted by patients so desperate they don’t know they’re being hoodwinked.
A few things about Lyme disease are not in dispute: The syndrome occurs after a person is bitten by a bacteria-laden deer tick. The widely accepted method of treatment is to prescribe oral or intravenous antibiotics for four to six weeks. Problem solved. Case closed. Disease be gone. At least that’s the way the Infectious Disease Society of America (IDSA) figures it.
“The chronic Lyme diagnosis has gotten to be a catch-all,” IDSA spokesman Steve Baragona said. “There isn’t any good evidence that it stays in the body after a standard course of antibiotics. Every study that’s looked at it has pretty much come up empty.”
People who remain ill for long periods after being treated for Lyme disease are probably suffering from symptoms associated with other disorders, he said.
“I don’t know what’s making them sick, but they are obviously very sick with something,” he said. “IDSA gets demonized as the bad guy who doesn’t want people to get better. But Lyme disease is tricky. Long-term antibiotic therapy is dangerous. It’s terrible these folks are suffering, but it’s bad to lump it all under chronic Lyme disease.”
Yet many thousands of people continue to suffer flu-like symptoms and a wide array of problems for years after being treated briefly for Lyme. Many of those diagnosed with chronic Lyme say long-term antibiotic treatments or other alternative methods of treatment have helped them to overcome their suffering and reclaim their lives.
The problem is finding a doctor willing to provide those treatments. Many doctors are unfamiliar with chronic Lyme – they aren’t trained to treat something that isn’t supposed to exist. And those who specialize in treatments often find themselves under fire. State medical boards follow standard guidelines that discourage long-term – and expensive – treatments.
“There are some doctors out there who are taking advantage of these people and their vulnerabilities and putting these patients at risk by treating them with long-term antibiotics that can be risky,” Baragona said.
Patients like Irons say thank goodness for those doctors. They and their advocates accuse medical board members and IDSA of being puppets in a plot to deny patient care. IDSA says it represents physicians, scientists, and healthcare professionals in promoting patient care, research, and prevention relating to infectious diseases. But chronic Lyme patients – and now the makers of the documentary Under Our Skin – characterize the infectious disease society as rife with conflicts of interest. They say the majority of doctors on the IDSA review panel that denies the existence of chronic Lyme disease received compensation from insurers and enjoyed business arrangements with pharmaceutical companies.
Extended antibiotic treatments can cost tens of thousands of dollars.
While Under Our Skin has become a rallying call, it offered little in new information for Irons. The Arlington housewife has become something of an expert since she began publishing Public Health Alert. The newspaper provides a national forum for stymied Lyme patients and gives freelance writers a forum for airing opinions that are sometimes over the top even from the viewpoint of subscribers frustrated with the politics of chronic Lyme.
“It gets things riled up,” Texas Lyme Disease Association board member David Kocurek said of the publication. “It gets a little edgy for me. I tend to stay a little more mainstream. It gets off in some of the fringe treatment areas. But people are desperate. I see why they do it.”
The movie’s release and a recent ruling from the Connecticut attorney general mark a shift in public perception of a disease that begins with a tiny insect bite but can lead to years of neurological deterioration, doctor neglect, bureaucratic nightmares, death – and, perhaps worst of all, an insinuation that sufferers are making the whole thing up.
“The movie has done a lot as far as public attention,” Irons said. “We’re not turning the corner yet, but there has been so much more positive media than in the past. The film has legitimized things in a way that patients have never been able to get across [to the public] because we come across like whack jobs.”
In an earlier 1991 episode of The Simpsons, Miss Hoover had rather nonchalantly informed her class about her Lyme diagnosis.
Miss Hoover: Principal Skinner will run the class until a substitute arrives.
Ralph: What’s Lyme disease?
Principal Skinner: I’ll field that one – Lyme disease is spread by small parasites called ticks. When a diseased tick attaches itself to you, it begins sucking your blood.
Miss Hoover: [clearly alarmed] Oh…
Principal Skinner: Malignant spirochetes infect your bloodstream, eventually spreading to your spinal fluid and on into the brain.
Miss Hoover: The brain? Oh, dear God …
Obviously, even comedy writers were well informed about Lyme disease by 1991. The disease first gained recognition in 1975 after a large number of people began complaining of arthritis and other physical problems around the town of Lyme, Conn. Researchers connected the disease to the deer tick two years later. Texas’ first confirmed case was in 1984. Infection sometimes creates a bull’s-eye rash around the tick bite, but not always. Detection is tricky since no tests have been developed that clearly determine whether someone has been infected or cured. Doctors rely on signs and symptoms as well as various tests to make a clinical diagnosis.
Information about the disease was slow to travel. Years passed before the medical profession began to recognize the disease, and many doctors, especially those in southern states, didn’t think the disease-carrying tick existed in their areas. Sick people were subject to years of misdiagnoses by uninformed or close-minded physicians. To this day, many Lyme disease patients say doctors refuse to test them, insisting that the disease is rare or nonexistent in Texas.
But early detection and treatment are crucial. Left unchecked, Lyme disease can take over a person’s body, making subsequent treatments less effective.
“If they identify it early, there are antibiotics that work effectively,” said Eric Alm, a longtime friend of mine from Arlington who began feeling sore and exhausted in 1985 and spent six years trying to find a doctor to tell him what was wrong. During that time, he awoke each morning feeling as though he’d drunk a gallon of tequila the night before – headaches, fatigue, nausea, and flu-like symptoms. In three months he went from an athletic 190 pounds to a skeleton-like 135 pounds. He had so little body fat that the veins in his forehead showed. A guy who used to play sports, guzzle beer, and chase women was suddenly struggling to tie his shoes and growing more discouraged by the day.
“If they can identify it in the first month, they can put you on antibiotics and deal with it pretty effectively,” he said. “But when I got it they didn’t have much of a clue about it. There hadn’t been many cases, and most were up in the northeast United States or Colorado. Texas hadn’t seen much of it, and doctors weren’t looking for it unless you walked in and had the bull’s-eye scar from the tick bite. But that only lasts for a couple of weeks for some people, and some people never even got the bull’s-eye scar.”
Alm recalled spotting ticks after an East Texas deer-hunting trip in 1985 but didn’t think to mention it to doctors. Few people had heard of Lyme.
“All the doctors thought I had some sort of cancer and kept testing for that,” he said. “They didn’t have any idea to look for a tick bite.”
In 1991, the same year The Simpsons was incorporating Lyme into plots, Alm met a Dallas neurologist with knowledge of the disease. The doctor detected the infection in Alm’s urine and began antibiotic treatments, but Alm had been carrying around the disease for so long the doctor doubted he would fully recover. Eventually, the treatments, combined with a healthy lifestyle, provided relief, and Alm is living relatively pain-free these days.
Other sufferers, such as Irons, haven’t been as fortunate. They were misdiagnosed or refused treatment by doctors afraid of running afoul of the Texas Medical Board.
Things appeared on the verge of change after State Sen. Chris Harris of Arlington got involved. He’d been sick for years but couldn’t find a doctor to diagnose his ailment. Only after he took his sick dog to a veterinarian did he discover his problem – turns out the dog had Lyme disease, and the vet ended up diagnosing Harris as well.
Harris chaired a Senate committee in 2000 to explore Lyme disease and recommended more research and more education for doctors. Small improvements were noted in the ensuing years. From 1990 to 1999, an average of 65 cases of Lyme disease were reported each year to the Texas Department of State Health Services. Since 2000, an average of 81 cases a year have been reported. Many cases still go unreported, according to the state health agency. And the University of North Texas Health and Science Center has become a state leader in efforts to develop an accurate test for the ailment.
Despite those advances, patients in Texas still have a tough time finding doctors – and once they do, word spreads, other sick people come running, and doctors find themselves overrun with patients and risking heat from medical officials.
The Texas Medical Board is a favorite punching bag these days for doctors and patients, who lament its policy of investigating anonymous complaints, accuse insurance companies of applying pressure, and blame the board for scaring doctors away from treating chronic Lyme.
Medical board spokeswoman Jill Wiggins responded to those accusations. She said the board doesn’t follow IDSA guidelines, but rather enforces a general standard of care that is determined by a panel of physicians.
“All complaints we receive based on standard of care are reviewed by at least two physician reviewers, so this is a kind of a peer review,” she said. “They are the ones who determine whether they see a violation of the standard of care, and they recommend to the board whether there should be a disciplinary action.”
Suspensions are not categorized as being related to treatment for a specific disease, so it is difficult to determine whether the board has suspended any doctors for bucking IDSA and treating chronic Lyme. Wiggins couldn’t recall any instances.
Even Kocurek of the Texas Lyme Disease Association can’t name a doctor suspended for treating the disease. But that’s hardly a defense of a medical board he describes as made up of “thugs” who threaten good doctors with license suspension.
“Doctors stop treating patients because the risk is too great – if they lose their license, they lose their livelihood,” he said.
Threats to yank a license are usually all it takes to make a medical professional walk the line. Bucking a medical board can lead to dramatic life changes.
Consider the case of nurse practitioner Ginger Savely, who lives in Austin but commutes to San Francisco to treat patients for Lyme disease rather than risk taking on state medical officials. She practiced medicine for seven years in Austin and became a Lyme specialist by accident.
“I had a couple of Lyme patients, and once the word got out that I was sympathetic and helpful, more came and more came,” she said. “It was eventually taking over my whole practice. When I left Texas it was 80 or 90 percent of my practice.”
In 2003 the Texas Board of Nursing investigated her chronic Lyme treatments, saying she was practicing medicine outside of her scope of training. She told them she was permitted to treat infectious diseases and continued her work.
The nursing board, Savely said, is just a mouthpiece for the Texas Medical Board, which had received a complaint about her Lyme treatments and wanted to “get me out of the business.”
She suspects another infectious disease doctor complained – a doctor who didn’t acknowledge chronic Lyme.
“I was really annoying the local infectious disease doctors because I was treating all these people,” she said. “They are so convinced it doesn’t exist in Texas. That’s their mantra. For them to tell people that over and over, and then the people come to me, and I treat them, and they get better – well, that didn’t sit very well.”
After three years of investigations and “harassment” by the nursing board, Savely hired a lawyer and prepared for a legal fight. But by then the doctor she worked with had received an unnerving phone call from the Texas Medical Board’s executive director, threatening to suspend his license if he allowed Savely to continue administering chronic Lyme treatments.
“He was a father and sole supporter of four kids, and he got nervous,” Savely said.
She remembers the doctor calling her aside and saying, “You just can’t work with me anymore, because after that phone call I’m afraid they are going to go after me.”
Savely tried to find another collaborating physician – nurse practitioners are required to work closely with a physician – but to no avail.
“Everyone I contacted in the greater Austin area said … ‘We don’t want to associate with you because we’re afraid we’ll lose our license,’ ” she said.
So for the past few years, Savely has flown to San Francisco for 10 days each month to treat patients, working closely with Dr. Raphael Stricker, a Lyme specialist.
“I had kids and was rooted in Austin and didn’t really want to move,” she said. “Even my Austin patients have to fly out to San Francisco to see me, because legally I can’t see them in Texas anymore. I feel safe there and don’t have people breathing down my neck. Right now in Texas, people are in sad shape because there are not a lot of options for them.”
She’d like to return her practice to Austin but says that’s unlikely.
“There would have to be some pretty amazing changes,” she said. “The mainstream medicine has been influenced by the IDSA to believe this is a disease that is hard to catch and easy to treat. Those of us who treat this know from experience that this is extremely prevalent, pretty easy to catch, and very, very hard to treat.”
IDSA and its followers look at Lyme like an old wives’ tale, she said. She calls them “Lyme denialists.” In reality, symptoms and treatments vary on an almost case-by-case basis, something that doesn’t sit well with review panels.
“They want everything to be very simple,” she said. “Treating Lyme disease is not simple. That’s why people who treat it specialize in it – it’s so complex, if you have it you want to see someone who specializes in that. This is an illness difficult to diagnose, with complex, multiple symptoms. It’s more than the average doctor wants to take on. Those of us who are doing it, it’s more of a mission, feeling bad for these neglected patients. Somebody’s got to do it. But there are days where all of us say, ‘There has got to be an easier way to make a buck.’ “
So why aren’t these doctors lauded?
“The IDSA is in bed with the insurance companies, and they are helping each other out,” she said. “There are conflicts of interest all over the place.”
Connecticut Attorney General Richard Blumenthal, working at ground zero for Lyme disease, launched an antitrust investigation, and in a 2008 report he cited serious flaws in the IDSA guideline-writing process. The guidelines are “commonly applied by insurance companies in restricting coverage for long-term antibiotic treatment or other medical care and also strongly influence physician treatment decisions,” he concluded.
His investigation uncovered “undisclosed financial interests held by several of the most powerful IDSA panelists,” he said. “The IDSA’s guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”
IDSA agreed in 2008 to create a new panel to review guidelines and revise if necessary. But chronic Lyme patients aren’t optimistic, assuming the panel will be stacked with doctors who toe the IDSA line.
Dr. Eugene Shapiro, a member of the original IDSA panel, doesn’t expect any significant revisions either. Chronic Lyme patients, he said, “don’t have science, they have anecdotes.”
Clinical trials show that Lyme is cured with short-term treatments, and people who complain of chronic Lyme are suffering from something else, he said.
“A lot of these people are suffering, don’t get me wrong,” he said, “but the issue is whether it’s Lyme disease. The logic was, if you had Lyme disease in the past, all that ails you in the future is Lyme disease.”
Guidelines were developed to protect patients from being treated with long-term antibiotics that can be more harmful than helpful, he said. Case in point: Phillip Moore, of North Carolina, who was treated with long-term intravenous antibiotics that made him sicker, cost upwards of $70,000, and did more harm than good. Afterward, he went to two different doctors who told him he had never been infected with Lyme. He filed a complaint, and North Carolina’s medical board suspended the doctor’s license for a year.
“I feel like I was used as a guinea pig for these expensive long-term antibiotics,” Moore said.
Shapiro denied that conflicts of interest helped shaped the panel’s decisions. “This is based on science, not anything but science,” he said. “I’m completely confident that review of the data will support the original guidelines.”
To lend credence to his opinions, he e-mailed Fort Worth Weekly a copy of an article published in The New England Journal of Medicine entitled “A Critical Appraisal of ‘Chronic Lyme Disease,’ ” written by Shapiro and several other doctors.
At the bottom of the article in small print is a list of the authors and their financial arrangements related to Lyme disease. Shapiro is listed as serving as an expert witness for Metropolitan Life Insurance Company on claims of disability related to Lyme disease and as receiving speaker’s fees from pharmaceutical companies.
Shortly after speaking to Shapiro, the Weekly was contacted by Moore, who said IDSA had informed him about this article and encouraged him to tell his story. Moore said he has never been compensated by IDSA or anyone else for telling his Lyme horror story; he just feels obligated to warn others.
“There are a lot of people being duped by snake oil salesmen.”
Mothers can’t pass Lyme disease to their newborn children, and lovers can’t transmit the disease sexually. Or at least that’s what the Infectious Diseases Society of American says. Anyone who claims different is using “anecdotal” rather than scientific evidence.
Anecdotally, Dawn Irons has three children and a husband who have been diagnosed with Lyme disease. She doubts that ticks bit them all. She suspects she’s the transmitter.
Irons also had six miscarriages between 1999 and 2003. Her obstetrician/gynecologist encouraged her to be tested for Lyme in 2002 after doing every other test he could think of. She saw a Dallas doctor, who resisted giving her a Lyme test. He thought she had multiple sclerosis, something she’d already been tested for. She demanded a Lyme test.
“We don’t have Lyme in Texas,” the doctor replied.
Irons had a meltdown. “Do a Lyme test!” she screamed.
He did, and the test results were positive.
“He told me it must be a false positive because we don’t have Lyme in Texas,” she said.
Another doctor confirmed the Lyme diagnosis, and Irons finally knew the source of her physical troubles. And she was certain that she had passed the disease to her kids, all of whom have shown symptoms throughout their lives. Her daughter fell into a coma in 2007 and was hospitalized at Cook Children’s Medical Center. Doctors tested for meningitis and other diseases but not Lyme, despite Irons’ pleas.
“They flat refused,” she said. “They said it isn’t common.”
Irons insisted that all her children were born with Lyme.
“They said that’s not even possible,” Irons recalled.
That’s the mantra for anyone following IDSA guidelines. The U.S. Centers for Disease Control and Prevention, however, says prevention and early diagnosis of Lyme disease “are important in pregnant workers. Lyme disease acquired during pregnancy may lead to infection of the placenta and possible stillbirth.”
In the twisted and often conflicting medical stances, the disease can infect a mother’s placenta and kill an embryo, but not infect a newborn.
The Irons family constantly struggles with health concerns, and medical expenses continuously leave them financially strapped. When Savely moved her practice from Austin to San Francisco, the Irons family couldn’t afford the trips to be treated in California. So they began seeing Dr. Jonathan Forester in Louisiana, a Lyme specialist who treats more than 600 patients from 26 states and four foreign countries. He hasn’t had any problems with that state’s medical board and doesn’t want any – he hesitates to discuss the political aspects of the disease.
“I’m not here to make a fight with anybody, I’m just here to get people well,” he said.
He knows what other Lyme doctors have faced across the country.
“A lot of doctors weren’t trained to believe in it,” he said. “I have 400 people in remission, so I’ll let them defend me. I don’t have to defend myself.”
Yet he too senses change in the wind. Treatment of chronic Lyme is going through the kind of evolution that’s repeated itself ever since medicine began. Eventually, treatment catches up to the ailments, he said.
“When the ideas of allergies first came out, people thought allergies were witches,” he said. “The same goes for chronic Lyme disease. It’s right now in a very controversial stage. But there are a lot of controversies in medicine. We may be in the minority, but the majority is not always right.”
