The back room of Bill Rathbun's house is dim and small. On this weekday evening, Rathbun is wedged between one side of the room that houses dozens of empty pill bottles, and the other side of the room inhabited by dusty remnants of a past life posters of the Cramps, the Adicts and Frank Zappa withered like bathroom wallpaper.
Rathbun looks strapping. But he can barely lift himself from a chair. At age 40, he sits in the back room, bookmarked between the two chapters of his life.
"It's very hard to believe this is happening," he says, cigarette trembling.
Three years ago, Rathbun got sick. His body's strength and ease of movement was replaced by an incessant, horrific pain. He realized he was in a battle for his health, but didn't then realize that he had also entered a war in the worldwide medical community. Even after Rathbun tested positive for Lyme disease, he says doctor after doctor looked him straight in the eye and told him he didn't have it.
Lyme doesn't exist in Colorado, they insisted. Maybe he had something else. Or maybe he was just crazy.
A cry for help
The scraggly doe appeared frequently on Rathbun's Manitou Springs lawn. Like many of the town's deer, she wasn't skittish. So when Rathbun, moved by sympathy for her pathetic appearance, set out to tame her, he didn't have too much trouble. Soon she was eating from his hand.
It was 1998, and Rathbun was healthy. He had always worked as a laborer, often putting in long days. But then came one blip in his otherwise stellar health: Around the time he befriended the doe, he broke out in a rash on his chest and came down with flu-like symptoms. After a few weeks, the rash disappeared. It returned a few months later, only to disappear again.
Eight years passed before Rathbun gave the rash any further thought. Hey, the Rathbun men were sturdy. Rathbun's father and brother were loggers. Early this decade, Rathbun did some logging himself, for about a month in Montana. The rest of the time, he worked in Colorado, where he'd lived since he was 14. Save for a few days in Florida, he didn't bother to leave the state for vacation.
Time passed peacefully until January 2006, when Rathbun blew a disc in his back lifting a 100-pound door at work. He was treated through workers' compensation, but couldn't shake the pain and other, bizarre symptoms that started cropping up. Worried, and finding little help from doctors, he began keeping a journal.
On Dec. 16, 2006, he wrote: "last night, L hand spasming below pinky, on side. Making pinky finger twitch sideways."
A few months later, he wrote, "Yesterday, sharp pains L ear. On Tues. sharp pains R ear, alternating w/ sharp pain R side of head."
Rathbun wondered if he had nerve damage. But there were other symptoms. He'd doze off at red lights. He'd get fluttering feelings in his heart, or chest pains so bad they doubled him over. He'd wake up and find that even lightly touching his head caused excruciating pain. He couldn't sleep. His vision was blurry. His jaw ached and cracked. Sometimes he'd catch sight of something in his peripheral vision, only to turn and find nothing there.
"I thought I was dying," he remembers. "I thought I was going crazy."
In early 2007, at the suggestion of friends and his workers' compensation doctors, Rathbun went to his own doctor to be tested for multiple sclerosis. His doctor sent him to a pain management specialist who ran a bunch of tests and then announced that Rathbun was slightly anemic, had carpel tunnel syndrome and was positive for Lyme disease.
Rathbun didn't even know he'd been tested for Lyme. He didn't know what it was. But he was overjoyed.
"I was so relieved," he says. "I saw a light at the end of the tunnel."
Roaming the Internet, he stumbled upon a long list of symptoms for Lyme. It described his day-to-day life.
According to the Center for Disease Control (CDC), the Lyme bacteria can cause a red rash, sometimes with a central clearing, within 30 days of a tick bite. If left untreated, the bacteria will spread to other parts of the body, causing a variety of musculoskeletal, neurological and cardiac problems. Over years, it can lead to arthritis, nerve damage or brain damage.
Lyme disease was first noticed in the United States in 1975 when children in Lyme, Conn., began developing arthritis. Doctors later discovered the illness was caused by a tick-spread disease. In 1981, the disease was identified as a bacterial spirochete (a spiral-shaped bacteria similar to syphilis), which was then named Borrelia burgdorferi. The bacteria was found to be spread through the bite of a specific tick, often called a deer tick or a blacklegged tick.
Rathbun's doctor told him that a routine course of antibiotics would cure him, and referred him to an infectious disease doctor. But the expert looked at Rathbun's positive test and said it must have been inaccurate, saying there is no Lyme disease in Colorado.
This was the beginning of Rathbun's nightmare. Suddenly, he was bouncing from doctor to doctor, trying to find one that would treat him for Lyme with long-term antibiotics since a short course of antibiotics given by one doctor was the only thing that made him feel any better. He met with a lot of rejection; even the doctor who originally diagnosed him deferred to the infectious disease doctor. When Rathbun tried to notify the El Paso County Department of Health and Environment of his disease, he was sent away. (Only doctors with patients meeting certain national requirements can report a Lyme case to the health department.)
Dr. David Martz, of Colorado Springs, says this type of scenario is common. Because guidelines for diagnosing Lyme are narrow, many doctors believe Lyme doesn't exist in many areas, including Colorado.
"If Lyme disease is what the academicians say positive screening blood test, definite tick bite then Lyme disease, if it exists in Colorado, is very rare," Martz says. "However, if that's too narrow of a definition of Lyme and a more definitive blood test becomes available, then it may well be that there is lots of Lyme disease in Colorado."
When local doctors wouldn't treat him, Rathbun turned to the Internet. And he hit the jackpot.
Victims in the middle
You could spend days, even weeks, reading about Lyme online. There are studies, support groups, forums, medical societies, clinics, patient advocates. But you don't have to do too much reading to realize Lyme attracts some of the most heated discussions in medicine today even with minimal attention from the media.
There is no disagreement that Lyme disease exists, or that it's often painful. The debate is about how easily it's cured, how long it can torment its host, and where and how it may be contracted. And boy, is it spirited, with doctors accusing each other of ignoring patients, or putting patients at risk, or setting up the world for an epidemic.
Most doctors say that treatment-wise, Lyme is barely more trouble than a sinus infection. You get it, you take some antibiotics, case closed. They say one kind of tick can transmit it, and that it's a problem only in certain parts of the country, particularly the Northeast.
The most famous guidelines on treating Lyme, published by a panel of doctors for the Infectious Disease Society of America in 2006, say that in rare cases, patients can experience something called "Post-Lyme Disease Syndrome" symptoms that linger after the standard treatment. But IDSA doctors say the presence of symptoms in no way proves the bacteria is still alive in the patient's body. It could be a psychological problem, or a misunderstanding of normal aches and pains, or something else entirely. But, they say, it's definitely not Lyme.
Dr. Eugene Shapiro, one of the guidelines' authors and a pediatric infectious disease doctor at the Yale University School of Medicine in Connecticut, says there's "never been a shred of evidence" that Lyme can survive past the standard 10 to 28 days of antibiotics. If anything, he says, the guidelines probably prescribe more drugs than are needed.
"You don't continue antibiotics just because someone is tired," he says.
Shapiro believes doctors who treat Lyme patients with long-term antibiotics are selling their patients hope that they have something curable, or that their symptoms have a name. He also says they're selling a lot of expensive intravenous antibiotics.
"One of the reasons [patients] get upset is when you say they don't have chronic Lyme what they hear is 'You're full of it,'" he says. "Clearly these patients ... are suffering ... but there's something called 'medically unexplained symptoms.'"
In a 2007 article titled "A Critical Appraisal of 'Chronic Lyme Disease,'" the New England Journal of Medicine said there is "substantial risk, with little or no benefit," in prescribing additional antibiotic treatment for Lyme patients who have "long-standing subjective symptoms."
Then there's the other camp.
A small, vocal group of doctors say Lyme can sicken patients for years, and even kill them. They say many doctors who are setting standards for Lyme are researchers working too far away from patients and too close to patents. In other words, the mainstream bigwigs are thinking with their pocketbooks, and leaving dissenters open to modern-day witch hunts by state medical boards.
Believers in chronic Lyme tend to be clinicians. They believe the disease is transmitted via several types of ticks, which are all over the country, and the world, for that matter. Left untreated, they say, Lyme bacteria will invade nearly every part of your body, from muscle tissue to the central nervous system to the insides of your cells. They believe the disease can hide in the body and can take months, even years, of antibiotic treatment to kill.
Or it can kill you.
From reading online, Rathbun quickly concluded he had chronic Lyme. He remembered the rash from 1998 and the close contact with the deer, an animal known to carry ticks. And though subsequent Lyme tests came up negative, Rathbun continued to believe the Lyme was there. Hiding in his body. Making him sick.
After searching the Web for support groups and networks of so-called "Lyme-literate" doctors, Rathbun found a doctor who agreed to put him on long-term antibiotic therapy. He's been on the drugs for over a year. He's still too symptomatic to return to work his sleep patterns are bizarre, and sometimes his pain is so intense he can barely move. When he's feeling sick, his body shakes. His memory lapses. A strange red dot appears between his eyes.
Still, Rathbun says, it's better than it was.
"Occasionally, I feel fairly normal," he says.
Rathbun now spends his days at home. He tries to force himself to leave the house once a day, however briefly. He says he misses working, and hates that his wife has to support him. Often alone, he spends time surfing the Web. He's met many friends there, including Tracie Schissel, his "patient advocate."
"When I found Tracie, it was the biggest relief," Rathbun says. "It was the first time I'd talked to someone that understood."
Patients helping patients
Minnesota would curse Tracie Schissel and her family.
But she didn't know that when she moved there in 1987, toting her 4-year-old son. She was in her early 20s, a vibrant young woman. She entered school to become a cop, got engaged and convinced her parents, brother and sister to join her in Minnesota.
She and her family spent long afternoons gardening. She went camping and hiking in the lake-spotted wilderness. And she pulled tick after tick off her body and that of her son.
In 1989, she started having gastrointestinal problems, chronic fatigue and depression. Then in 1992, she was diagnosed with Crohn's disease, which strikes the digestive system. It forced her to quit the police force in 1994, after only two years on the job. She suffered through six bowel obstructions.
"I'd be hospitalized for seven to 14 days, until my bowels would open up," she remembers.
By 2005, Schissel had been working for a medical center for years, and was training to become a sleep lab technician. One day, she noticed what she thought was a spider bite. It was inches across and seeping, and antibiotics didn't seem to help. Then she noticed a rash when she got out of the shower. Finally, her left knee began to swell.
Tests for Lyme came back positive, and Schissel was prescribed the normal short-term antibiotics. But she still felt sick when the pills were gone, and wanted more treatment. It took her months to get on long-term antibiotics.
She wanted to use her job to reach out to others, and help them recognize their symptoms, get tested and get treated. She started bringing literature to the doctors she worked with.
"Here I've got a PIC line in me [for Lyme antibiotics] that's a catheter that goes all the way to your heart," she says. "I'm somebody that works there. I would have doctors just look at me in the most arrogant and condescending way, and they would actually throw the information away while I was standing there. That's when I knew we had a long road."
A short time later, Schissel was on the phone with her sister, Leslie Wermers, describing the symptoms of her new diagnosis. Wermers had her own symptoms matching the Lyme profile she'd even had the characteristic rash in 1996. Back then, a doctor told her that he couldn't diagnose her with Lyme because he couldn't find a tick on her. (That, of course, was false.)
Remembering this, Wermers quickly had her records transferred to her sister's doctor. Buried in her medical file was a positive test for Lyme disease. Wermers' doctor had never told her about it.
"She never knew for 10 years that she had a positive," Schissel says. "What if a patient came back positive for cancer, and they didn't tell you?"
Wermers' doctors had long suspected multiple sclerosis and had given Wermers an annual spinal tap for 10 years. By 2006, Wermers had lesions on her spine, brain, lungs and liver.
Schissel's doctor tested Wermers for Lyme. She was positive. Now, both sisters were on long-term antibiotic therapy. And both sisters were mad as hell.
Together, they started the Minnesota Lymefighter's Advocacy, with the intention of helping other Lyme patients in their state. But, through the Internet, they ended up helping patients from all over the world. They gave out information on chronic Lyme disease and connected patients with Lyme-literate doctors.
In the meantime, Schissel was slowly getting better. She began having normal bowel movements for the first time in about 17 years. Wermers came to stay with her sister for periods of time. Schissel would dutifully change Wermers' positions at night to prevent her sister from getting bed sores.
"She would wake up and say, 'I love you, Sis,'" Schissel remembers.
On Nov. 2, 2008, Wermers' heart swelled while she slept. She never woke up. She was 41.
The doctor is in
In areas where Lyme is endemic, hunting chronic Lyme doctors seems to be an emerging sport for state medical boards.
Dr. Joseph Jemsek, a chronic Lyme physician who was taking an average of 80 new patients per month, was investigated by the North Carolina Medical Board and given a one-year "suspension with stay," meaning he could continue to practice as long as he met stipulations.
Dr. Charles Ray Jones is in the midst of two legal battles with the Connecticut Medical Board. In chronic Lyme circles, he is considered the premier expert on treating children with the disease.
The situation has driven many doctors to hide their chronic Lyme practices from the public, according to patients, doctors and Web sites. Many clinics also don't accept health insurance, fearing the companies will sue them to get their money back.
Martz, the Colorado Springs doctor, entered the fray several years ago when he stared at his own positive test for Lyme disease.
By most people's judgment, Martz, now in his 60s, had lived a great life. He graduated from the University of Colorado at Denver's medical school in 1965, followed by an internship and residency in St. Louis, and a year's training at Stanford University. In 1970, he began practicing in the Springs, where he says he was consistently the early bird in discovering trends from HMOs to specialized cancer treatment. An internist, hematologist and oncologist, he once served as president of the El Paso County Medical Society, and he directed a local hospice program before retiring in 2003.
In addition to a fulfilling career, Martz had a loving wife, Dee, two children and two stepchildren. But in April 2003, his luck changed.
"I suddenly got sick, and I've always been a healthy guy," he says. "I was an 18-hour-a-day person, sometimes jokingly referred to as the Energizer Bunny of the senior citizens."
Martz took every test his doctors could think of. But despite symptoms that sometimes left him crawling, they couldn't diagnose him.
"Two months later, my neurologist said, 'There's no doubt that you have ALS. And, in fact, it's moving pretty quickly. And chances are that within six months you'll probably be in a wheelchair. And your life expectancy is probably just 2 1/2 years or so,'" Martz remembers.
Martz and his wife, practical people, weren't interested in chasing a miracle cure. Martz worked on his relationships with family members. He went fishing in Canada. The couple traveled to Kenya for the trip of a lifetime.
But as he got sicker, Martz couldn't shake a feeling of doubt. His arthritis, body pain and profound fatigue weren't typical of ALS but they were of Lyme disease. So, even though he'd received a negative Lyme test, he sought "sensitive" testing for it at a controversial California lab called IGeneX.
The lab found him positive for Lyme. Martz started dosing himself with antibiotics.
"Within a month, my energy went from a half an hour of conversation to four or five hours being up around and able to go to Circuit City or something like that," he says. "Within two months, for the first time, I could cross my legs without having to use my hands to pull them up. And within three months, for the first time in a year, I could get up out of a chair without having my wife pull me up."
He's never gotten back to 100 percent, and says there was likely some damage that will never heal. But by the end of the year of treatment, in early 2005, Martz says he was 60 percent of the man he had once been.
In February of that year, Martz opened Rocky Mountain Chronic Disease Specialists with a local friend and fellow retired doctor. The two foresaw a part-time gig, helping some Lyme and ALS patients and gathering information they could later transfer into research papers.
They were wrong. Martz found himself working full-time. His buddy went back into retirement, and Martz had to bring in other physicians, physician assistants and staff. He says he treated 850 to 900 patients from all over the nation, as well as Canada, England, Scotland, Norway and Spain. Much to his satisfaction, Martz noticed that 15 to 20 of his approximately 90 ALS patients were showing measurable improvement on antibiotics. Another 20 to 35 stopped declining.
But in August 2007, Martz closed the clinic.
"I could not stand the 50-hour workweek's effect on my body," he says. "In the course of four years, I had four heart attacks."
Not to mention a bloodstream infection and clots in his lungs.
"It was a devastating decision for me," he says. "Because there's no other physician in the world that has been successfully treating ALS except our office."
But now, Martz is planning four papers. Two concentrate on ALS patients. One describes in detail the symptoms and reactions to treatment of all of his patients, including chronic Lyme patients, and those with ALS, Parkinson's disease and MS. One paper will focus solely on Lyme in rural Colorado Martz had about 45 patients with Lyme who lived in or around Yuma, on the eastern plains.
After treating so many patients, Martz has his theories about Lyme. Starting with this one: Lyme hides in the body, evading the immune system. As the body tries harder and harder to kill Lyme, that makes the carrier sick.
He posits that since Lyme is closely related to syphilis, there's reason to investigate how it could be spread. He says there's plenty of clinical evidence that it can go from mother to child in the womb (the IDSA would disagree), but less investigation into whether it could spread sexually.
In short, Martz wants the medical community to take a second look.
"I am not a radical," he says. "I'm not a zealot. I very strongly feel that this must be approached thoughtfully, and scientifically, and carefully, but I do think that there's something there, and that we need to take more steps to sort out what it is. And those who don't believe it and those who do believe it both need to set aside their prejudices and say, 'Look, these are believable people with very disabling symptoms.'"
In 1999, when Ben Petrick was in his early 20s, it looked like he was going to make it. And he almost did. For four years, he was in and out of the major leagues, playing baseball for the Colorado Rockies.
But it didn't last. His batting average began to drop, and then he fell off the baseball planet.
His dad, incidentally, fell with him. Both tested positive for Parkinson's.
"We came down with it within seven months of each other," Petrick says. "I was 22."
Petrick played with his Parkinson's pills in his back pocket. He didn't tell his teammates. But when a fastball tipped off the edge of his catcher's mitt, he realized he was losing his speed.
So Petrick now lives in Oregon with his wife and baby daughter. His wife teaches school, and he gives paid lessons for kids and lives off disability. He spends most of his day taking care of his little girl, and calls nearby relatives when his symptoms get so bad he can't handle her.
Petrick should be waiting to die. But he's holding on to hope, for one reason: Back in 2006, Martz diagnosed him with Lyme disease and put him on antibiotics.
"Within a week and a half, it was like, boom, I started feeling better," Petrick says.
He cut back on his Parkinson's meds until the antibiotics started to make him feel sick a common complaint from chronic Lyme patients, which some doctors blame on increased immune response or toxins from the die-off of the Lyme bacteria. So Petrick went off the antibiotics. But now, at 30, he says he's ready to start them again.
Petrick's wife, Kellie, believes the antibiotics will make him better.
"In my heart," Ben says, "I do too."
The green persuasion
In most cases, Lyme is easily treated with basic antibiotics like amoxicillin or doxycycline. No drugs have been formulated to treat it specifically.
The first vaccine was released in 1998. It flopped, and some patients sued the pharmaceutical company, saying it made them sick.
Tests developed for Lyme are inaccurate, say people on both sides of the argument. Shapiro, the Yale doctor, says they churn out many false positives. Chronic Lyme doctors say they often produce false negatives, because they don't test for all Lyme antibodies.
In 2006, as some companies tried to make a buck, the IDSA gathered experts to update its guidelines on treating Lyme guidelines that are still used by many insurance companies to set policy on what they'll pay for.
It was 2006, and IDSA fielded a lineup of Ivy Leaguers. According to research by Kris Newby, senior producer for Under Our Skin (see "There's a lot of money being made," p. 22), nine of 14 of those doctors had received money from Lyme vaccine manufacturers. Four out of 14 had received money from manufacturers of test kits for Lyme or other tick-borne diseases. Three of the authors and three of their universities had patents on those test kits, including Yale University, Shapiro's employer.
So chronic Lyme believers like to note that the 2006 guidelines recommend testing for patients if Lyme is suspected, even if the characteristic rash isn't present despite the fact that the CDC says Lyme should be diagnosed based on a doctor's judgment.
Asked if he felt he had a conflict of interest, Shapiro replies, "Definitely not. Why would I?"
When Yale's patents are mentioned, he says, "I had nothing to do with it personally in any way, shape or form. I didn't benefit from it at all."
The IDSA is also quick to dismiss any allegations of wrongdoing.
"I really think that this is something that's been brought up by this group of advocates with not a lot of evidence to back it up," says spokesman Steve Baragona.
Baragona adds that the IDSA hired an individual in 2006 to oversee selection of panels and ensure there are no conflicts of interest. And the IDSA does have other professional societies backing its conclusions, like a panel with the American Academy of Neurology.
But the IDSA panel and the AAN panel shared several members, and were working on the guidelines at the same time.
It was enough to disturb Connecticut Attorney Gen. Richard Blumenthal, whose state is still ground zero for Lyme disease. An investigation he headed produced an out-of-court agreement in May, with the IDSA agreeing to form a new panel to review Lyme guidelines. An ombudsman whose main responsibility is to root out conflicts of interest will oversee the whole process. The IDSA says it's close to announcing the new panel's members.
Meanwhile, several states have passed or tried to pass laws protecting chronic Lyme doctors and/or ensuring that insurance companies pay for chronic Lyme treatment. The issue has even been raised in Congress.
Between 1992 and 2006, 248,074 cases of Lyme were reported to the CDC. Reported cases increased 101 percent from 1992 to 2006. But the CDC sets high standards for cases of Lyme disease that can be reported higher standards than those needed to diagnose Lyme, in fact.
Between 1992 and 2006, Lyme cases were reported from every state in the union, with a handful from Colorado a small number compared to states in the Northeast.
The chronic Lyme community believes Lyme is extremely underreported and has spread to every state and many other countries. Bacteria are being discovered that are closely related to the Lyme bacteria, cause the same symptoms as Lyme, and are spread by ticks different kinds of ticks that live in different parts of the country.
Martz says he had six patients who "clearly got sick after a Colorado-based tick bite." In Boulder County, Mary Parker says she found a swollen bite on her body after hauling wood outside her home. She came down with the characteristic rash and was diagnosed over a year later. Several of her neighbors, and her dog, got Lyme, too, she adds.
In fact, many dogs in Colorado have been diagnosed with Lyme. Results from a single veterinary test facility, IDEXX labs, combined with telephone surveys and results from veterinary clinics, found 571 Colorado dogs with Lyme disease between 2001 and March 2007.
During the same time period, the CDC recorded one human case of Lyme in Colorado.
Back in his living room, Bill Rathbun paces the floor. He's having a bad day. The inexplicable red dot has appeared between his eyes. His head tremors involuntarily. His mind wanders.
Rathbun feels like a victim, one of many in a worldwide epidemic. And he blames the mainstream doctors, who he believes are sacrificing his health, and the health of others, in the name of profit.
"I just can't believe these doctors are getting away with it," he says. "I can't believe it."
Suddenly, he is stuck on history. World War II. How the Holocaust went unnoticed by the world for so long, only being revealed when soldiers opened the gates to the death camps.
"When Hitler said people will more easily believe the great lie than the small lie," he says, "he knew what he was talking about."