http://www.greatfallstribune.com/interactive/article/20130309/NEWS01/303090026/Lyme-disease-divides-experts-Great-Falls-family-s-journey-disease-highlights-struggle-controversial-illness
Lyme disease divides experts: Great Falls
family's journey with disease highlights
struggle with controversial illness
- By David Murray
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- News
- / Local News |
- 4:50 PM, Mar. 11, 2013 |
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As the snow begins to melt in Montana, adult ticks emerge from hibernation and climb to the tips of low vegetation in search of their first blood meal. Ticks do not fly or jump but wait patiently for a warm body to brush past them. According to the Montana Department of Health and Environmental Sciences, they become aroused by the odor and breath of mammals, and transfer easily by stretching their legs toward the host. The consequences can be devastating.
In March 2010, Katy Peterson, now 31, began exhibiting symptoms of an odd illness that defied simple diagnosis.
In March 2010, Katy Peterson, now 31, began exhibiting symptoms of an odd illness that defied simple diagnosis.
“I broke out in hives and swollen joints, fatigue and vomiting — a lot of flu-like symptoms,” Katy said from her home in Great Falls. “From there, it just progressively got worse. Other things came up like brain swelling. Sometimes I’m bedridden just because of the weakness, and then you also lose comprehension skills. Sometimes I can’t read, sometimes I can barely balance my checkbook. I don’t drive very often anymore.”
Katy’s illness continued without an accurate diagnosis for two years. Sometimes the symptoms would disappear for a week; sometimes she could barely get out of bed for days at a time. Her doctors were stumped, alternately theorizing she might be suffering from an allergic reaction, hiatal hernia, auto-immune disease or rheumatoid arthritis. She was prescribed steroids, antihistamines and anti-inflammatories. At least one doctor suggested she begin taking antidepressants.
When her illness reached a crisis point early in 2012, her family in Belt sent her to see a specialist in Seattle. Shortly after examining her, Dr. Ralph Golan told Katy she had likely been exposed to Lyme disease and urgently pressed her to seek treatment for the chronic form of the disease.
Today, Lyme disease is one of the most divisive illnesses in American medicine. Virtually no aspect of this tick-borne illness is undisputed. Researchers, doctors and patient advocacy groups hotly debate Lyme disease’s prevalence, diagnosis and treatment. Even the existence of chronic Lyme disease is disputed.
Emergence
Lyme disease is a tick-borne illness endemic to the northeastern United States and the western Great Lakes region. According to the Centers for Disease Control and Prevention, more than 33,000 confirmed or probable cases of Lyme disease were reported in the United States in 2011, though, because of misdiagnosis and underreporting, the actual number could be many times higher.
Early symptoms of the bacterial infection include a large bull’s-eye rash, fever, headache and fatigue. Left untreated, it can spread to the joints, heart and nervous system, causing inflammation, meningitis and heart palpitations. In advanced stages, Lyme disease sometimes mimics other chronic illnesses like multiple sclerosis, Alzheimer’s, Parkinson’s and Lou Gehrig’s disease. Today, Lyme disease is the most common vector-borne illness in the United States, but it was unknown to scientists just 35 years ago.
According to the National Institutes of Health, researchers noticed that an unusually large number of children in the area surrounding Lyme, Conn., were being diagnosed with juvenile rheumatoid arthritis in the early 1970s. Their symptoms typically started during summer and often included a skin rash just before the onset of joint inflammation. Many patients recalled having been bitten by a tick.
At the same time, 2,000 miles west at Rocky Mountain Laboratories in Hamilton, Mont., Swiss scientist Dr. Willy Burgdorfer was investigating the transmission of tick-borne illnesses to humans. In 1981, Burgdorfer isolated the bacteria responsible for Lyme disease in deer ticks that had been collected in New York state. For his work, Burgdorfer was nominated for a Nobel Prize in medicine, and the bacteria that causes the disease, Borrelia burgdorferi, was named in his honor.
Since then the disease has spread rapidly. Lyme disease has been reported in every state in the country except Hawaii, though the vast majority of cases remain confined to 13 states in the Northeast and Great Lakes regions. In the past decade, there has been a consistent occurrence of Lyme disease in the western coastal regions of California, Oregon and Washington, and a growing number of patients with Lyme disease are being diagnosed in eastern Canada and British Columbia.
For many years, Montana was one of a handful of states that had no confirmed cases of Lyme disease.
It wasn’t until 2006 that the CDC confirmed a case of Lyme disease in the state. Since that time, the Montana Department of Public Health and Human Services (DPHHS) has reported an average of five cases a year of Lyme disease. The DPHHS and the CDC attribute all confirmed cases in Montana to people who traveled outside the area and contracted the illness in a recognized endemic state.
“There is virtually no risk of acquiring Lyme disease within the state of Montana,” said Elton Mosher, disease specialist with the DPHHS. “We do not currently have the tick that is a competent vector for transmitting Lyme disease to humans. We entertain this kind of concern every year from people, especially in the northwest portion of the state, who swear up and down that they’ve got Lyme disease — and when we look at it more thoroughly, it’s just not supported. We just do not have those ticks in Montana.”
But like everything else about Lyme disease, where it can and cannot be contracted is disputed.
“I find it very troubling that any reputable organization could state that something like Lyme disease absolutely does not exist in a certain state,” said Golan, a Lyme disease specialist and the physician who diagnosed Katy. “Lyme disease is carried by a tick and ticks attach to deer, attach to rodents, attach to birds, and these animals don’t know where state borders are.”
Katy and her family may never know with any certainty where she contracted Lyme disease. It is just the first in a whole list of confused and uncertain issues surrounding Lyme disease.
Detection
One of the greatest frustrations for Lyme’s families like the Petersons is the general lack of public knowledge about Lyme disease and the reluctance of physicians to test for it. In a state that is listed as “Lyme disease free” it’s difficult to get medical professionals to seriously consider Lyme disease as an option.
In the first year of Katy’s illness, she and her husband, Jake, learned to expect doubt from most of the people they spoke to about it. Part of the problem was that she often had no clear outward appearance of being sick. The symptoms would come and go. On good days, she’d feel well enough to work hard at the couple’s janitorial business. On bad days, she’d retreat to her sewing room, where she’d spend hours isolating herself from the people around her.
“I think, within our family and friends, there was a lot of doubt — like, ‘Katy, get over it,’” she said.
It didn’t help that doctor after doctor was unable to offer a conclusive answer as to what was ailing her.
“Over the course of this, we’ve went to every doctor we could and have had almost every test performed,” Katy said. I was just a guinea pig. Nobody knew what was going on. We’d go to another doctor, knowing as we were sitting there that you’re not going to get any help from them and you’ve just wasted another $500. I felt like they weren’t even listening to what I had to say. It was like, ‘We’ve got this young couple who doesn’t got a clue.’ That we were just these hypochondriacs.”
“A lot of the symptoms she had — we’d look on the Internet and they came back as Lyme’s,” Jake Peterson said of his wife’s illness. “We asked every doctor we went to and no doctor would even test us for it. Nobody would even hear it. ‘That’s crazy, there’s no Lyme disease in Montana.’”
It’s a common complaint expressed by many families who have struggled with Lyme disease. According to Golan, the problem is nested in the wide menu of symptoms that can be expressed by Lyme’s, and in a medical community that is reluctant to recognize an illness that does not easily fit within accepted models of infectious disease.
“When I went to medical school, if a patient had more than seven symptoms, the professor said they needed to see a psychiatrist,” Golan said. “These people are thought to be nut cases when in fact they’ve got a physical problem affecting many parts of their bodies. What makes it even harder is if the Lyme’s happens to have an effect on their brain and they present psychiatric symptoms, then most doctors are reaching for their prescription pad for some tranquilizer or antidepressant or anti-anxiety agent.”
The turning point came with a quick succession of events that began in early 2012. In January of that year, the Peterson’s youngest son, Liam, then 2, began to exhibit symptoms similar to his mother’s.
“When my son got sick, I knew exactly what was going to happen to him,” Katy said. “He got the swollen joints, the rash. His knee swelled up to the size of a softball. We would be in the hospital with him, and I would tell the nurses, ‘Look at this swollen joint, look at the rash — it’s Lyme’s.’”
Still the physicians demurred from ordering Lyme disease tests for either Katy or her son. Then Katy learned she was pregnant. The Petersons feared that the disease would afflict her unborn child, and they sought advice from Echoz Pregnancy Care Center in Great Falls.
“I went in there, and I just leveled with them,” Katy recalled. “I have been sick, my son is sick, I am pregnant and I’m scared.”
Echoz referred the Petersons to Dr. Stacy Kingsland, who agreed to test Katy for Lyme’s. When the test returned, it did not conclude that she was currently infected with Lyme’s, only that she had been exposed to the bacteria at some point.
In an odd respect, Katy could feel fortunate for this type of positive test result. In Montana, for a patient to be confirmed as being infected with Lyme disease requires they pass a four-tiered test.
“No. 1, they have to have the distinctive bull’s-eye rash,” Mosher said. “They have to have a history of a tick bite, they have to have traveled to an area where Lyme disease is endemic, plus they have to have lab confirmation.”
Each one of these elements is somewhat problematic. According to a 2003 study by the CDC, as many as 30 percent of confirmed Lyme disease patients never exhibit any kind of rash at all, and in those patients who do, more than a third of the rashes are atypical and do not develop into the classic bull’s-eye pattern. A significant percentage of Lyme disease patients, like Katy Peterson, do not recall being bitten by a tick, and the questions about where a patient can potentially contract Lyme disease have already been discussed earlier in this story.
“The only easy diagnosis of Lyme’s is in those patients who walk in with a bull’s-eye rash and who may have some of the clinical symptoms that go along with Lyme’s,” Golan said.
Confirmation of Lyme disease relies on laboratory testing, which is itself controversial. The Infectious Diseases Society of America (IDSA) and the CDC both recommend a two-tiered blood test for Lyme disease. Currently, there is no simple way to grow the bacteria that causes Lyme disease, as would be done when testing for other bacterial diseases like tuberculosis, pneumonia or staph infections. Instead, the first test for Lyme’s disease looks for antibodies the body produces to fight the infection. If that test returns positive, then a second test is performed called the Western blot test, which detects proteins on the bacteria’s surface.
The problem is that in the first weeks after infection, antibody tests are unreliable because the auto-immune system has not yet produced enough antibodies to be detectable. And, if the patient had been taking any antibiotics prior to the time of testing, that may hamper the accuracy of testing. Several studies have found that antibody tests for Lyme disease are correctly positive only about 65 percent of the time, and, without a positive antibody test, many doctors are reluctant to order the Western blot test, which, though more accurate, is expensive and technically difficult to perform.
Treatment
After testing positive for the Lyme’s antibody, Katy was flown to Seattle to be examined by Golan. According to the Petersons, Golan was seriously concerned about Katy’s health and recommended she immediately begin aggressive long-term antibiotic treatment, including having a catheter inserted to deliver medication directly to her heart.
Katy’s pregnancy complicated her treatment options, however, and her Montana physician, Dr. Robin Thomson, recommended Katy receive only a low maintenance dose of antibiotics to inhibit the transmission of Lyme’s to her unborn child. After the baby was born, Katy’s antibiotic treatment could begin in earnest.
The type of treatment both Golan and Thomson have recommended for Katy is not endorsed by either the IDSA or the CDC. In fact, neither of these organizations recognizes chronic Lyme disease as a clinically proven illness, preferring instead to refer to lingering symptoms of fatigue, pain and joint or muscle inflammation as “Post-treatment Lyme Disease Syndrome” (PTLDS).
“Most medical experts believe that the lingering symptoms are the result of residual damage to tissues and the immune system that occurred during infection,” a CDC public statement on Lyme disease says. “Regardless of the cause of PTLDS, studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo. Furthermore, long-term antibiotic treatment for Lyme disease has been associated with serious complications.”
The IDSA’s guidelines for the treatment of Lyme disease (adopted by the CDC) call for oral antibiotics to be taken for 10 to 28 days. But a significant number of independent researchers and Lyme’s disease patient advocacy groups say the IDSA’s treatment guidelines are flawed, and that a one-month regimen of oral antibiotics is insufficient to eliminate a bacteria that is slow-growing, burrows deep into tissues and can change its form and structure in response to antibiotic treatment.
“I believe, and the International Lyme and Associated Diseases Society (ILADS) believe that Lyme organisms can be alive and perpetuate problems for years, and one month of treatment doesn’t even begin to address them,” Golan said.
The credibility of IDSA’s Lyme disease guidelines was seriously undermined in 2006 when it was revealed that a number of the doctors who authored these guidelines either cited their own research into Lyme disease to validate them or had connections to the pharmaceutical companies that develop and sell Lyme disease diagnostic tests. In 2008, the Attorney General’s Office for the state of Connecticut announced an antitrust investigation into the IDSA’s process for writing Lyme disease guidelines had found serious flaws.
“The IDSA’s 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests — in drug companies, Lyme disease diagnostic tests, patients and consulting arrangements with insurance companies — to exclude divergent medical evidence and opinion,” said Attorney General Richard Blumenthal, now a U.S. senator.
In 2010, an independent review panel of nine scientists and physicians unanimously upheld the IDSA’s 2006 treatment guidelines. But the damage already was done. Many researchers and patient advocacy groups continue to believe that the IDSA and CDC are compromised in their standpoint on Lyme’s by a too cozy relationship with pharmaceutical and insurance companies.
During an interview in 2007, Burgdorfer, the discoverer of the Lyme disease bacteria and a scientist emeritus at the National Institutes of Health said, “I am a believer in persistent infections because people suffering with Lyme disease, 10 or 15 or 20 years later, get sick again. Because it appears that this organism has the ability to be sequestered in tissues, and it is possible that it could reappear, bringing back the clinical manifestations it caused in the first place.”
“The controversy in Lyme disease research is a shameful affair,” Burgdorfer went on to say. “And I say that because the whole thing is politically tainted. Money goes to people who have, for the past 30 years, produced the same thing — nothing. There are lots of physicians around who wouldn’t touch a Lyme disease patient. They tell the nurse, ‘You tell the guy to get out of here. I don’t want to see him.’ That is shameful. So this shame includes physicians who don’t even have the courage to tell a patient, ‘You have Lyme disease, and I don’t know anything about it.’”
Toward wellness
In November 2012, Katy Peterson gave birth to a healthy baby girl named Lily. A few weeks after Lily’s birth, Katy began long-term antibiotic treatment for her chronic Lyme disease. Progress has been slow. She still feels tired a great deal of the time. Sometimes her joints and muscles ache, and Katy still avoids crowds where she can become panicky.
“I just get too confused,” she admitted. “The confusion and the chaos is too much — and then I’m worried about driving back.”
Yet while the symptoms have not gone away, Katy and her family have two things they lacked since their journey through Lyme disease began two years ago — a clear understanding of the illness they face and hope that things will improve in the future.
“From the very beginning, I made a promise that I would not get stuck emotionally my illness, and that we would grow as a family despite my being ill,” Katy said. “I could choose to be miserable, and sometimes I do chose to do that. But when it comes right down to it, the only real choice is to be hopeful.”
