New Times / Cover Story
The following articles were printed from New Times [newtimesslo.com] - Volume 28, Issue 11
'The Great Imitator': Lyme disease is much more common than initially believed
BY RYAN MILLER
A Western blacklegged tick is like something out of a Ridley Scott-directed nightmare in miniature, all HR Giger joints and glossy exoskeleton. Adult females resemble burnt sesame seeds dipped in ketchup.
Despite their miniscule size—with their eight legs spread wide, they’d pretty much cover Franklin Delano Roosevelt’s nose on a dime—they can have a huge impact on someone’s life. Blacklegged ticks can carry bacteria known as Borrelia burgdorferi, which can cause Lyme disease, an infection that attacks people in the form of rashes, arthritis, numbness, neurological disorders, and worse.
The disease found more of a spotlight than usual this year after a report from the Centers for Disease Control expanded Lyme disease’s scope tenfold in the United States.
The centers have typically received about 30,000 reports of Lyme disease each year from state health departments and the District of Columbia. Admitting that “this number does not reflect every case of Lyme disease that occurs in the United States every year,” the centers undertook several projects to comb an insurance database, data from a survey of clinical laboratories, and other survey information.
The results of those efforts, reported in August, indicate that about 300,000 people are diagnosed with Lyme disease each year.
“Notably,” the centers cautioned on their website, “this new estimate does not [emphasis theirs] affect our understanding of the geographic distribution of Lyme disease. Most Lyme disease cases reported to CDC through national surveillance are concentrated heavily in the Northeast and upper Midwest, with 96 percent of reported cases occurring in 13 states. The preliminary results obtained using the new estimation methods mirror the geographic distribution of cases that is shown by national surveillance.”
An accompanying map of reported cases of Lyme disease in 2011 shows dark blue clouds blanketing the Northeast, Michigan, and Wisconsin. The clouds are made up of tiny dots; at the scale the map displays on a standard web browser, each is about the actual size of a tick, and each represents a confirmed case placed randomly in a patient’s county of residence—not necessarily the place where the infection happened.
In some places—like New Jersey—the density makes for a solid blue carpet. Over in California, there are pinpricks here and there. San Luis Obispo County is a field of unblemished white.
A few dots speckle nearby Santa Barbara County, where infected ticks have been found at Vandenberg Air Force Base. That county’s vector control district reports that “Lyme disease is a very complex disease and is extremely difficult to diagnose, as at least 41 possible symptoms have been identified. Indeed, it has been called ‘The Great Imitator’ because its symptoms mimic so many other diseases. Yet, a few or even many symptoms may be completely absent in some victims.”
That soup of symptoms is certainly problematic for patients, but it’s also problematic for health-care providers who have a couple score symptoms to consider, along with the knowledge that no two patients present those symptoms the same way and that the disease itself manifests in different ways depending on how long it’s been in someone’s system.
All this has led to questions of what, exactly, Lyme disease is, who has it, and what can be done about it, with some groups—such as lymedisease.org—claiming thousands of Lyme sufferers fail to get appropriate care because the official definition of the illness is disconcertingly narrow.
Members of lymedisease.org planned a protest for the Infectious Diseases Society of America meeting set for Oct. 5 in San Francisco. Their argument was that the IDSA’s guidelines “misrepresent science and restrict access to care.”
The split between the two perspectives on the disease is perhaps best summed up by comparing two descriptions of its geographic prevalence.
From lymedisease.org: “Lyme disease has been found on every continent except Antarctica. It is found all across the United States, with a particularly high incidence in the East, Midwest, and West Coast. It seems to be spreading.”
From the CDC: “Lyme disease is the most commonly reported vectorborne illness in the United States—in 2012, it was the 7th most common Nationally Notifiable disease. However this disease does not [emphasis theirs] occur nationwide and is concentrated heavily in the Northeast and upper Midwest.”
On the CDC’s 2011 map, there are several states with just two dots, one dot, or none at all. California as a whole has a bit more than 50 spread from north to south.
On that scale, San Luis Obispo County isn’t so much as a blip on the Lyme activity radar. Ann McDowell, an epidemiologist with the county’s Public Health Department, said she’s been working to get the state to recognize that there are ticks here infected with Borrelia burgdorferi.
“The state says you have to have two clearly endemic cases, no travel history, no nothing, to be considered a Lyme endemic county,” McDowell said. “So it has been my burning desire to show that. So far, I’ve gotten them to agree on one.”
Out of 20 cases reported last year, she explained, only one fit the necessary criteria to be considered “homegrown”—the county’s first. She’s been working to get local doctors presented with possible cases to document everything: a patient’s travel history (or lack thereof), the infection timeline, the onset of symptoms, photos of the bite site.
The joke is that ticks don’t jump off their hosts at arbitrary lines, and Monterey to the north and Santa Barbara to the south are both considered endemic counties.
“Come on, guys, the deer are going back and forth at the county border,” McDowell said. “We’ve got Lyme disease here, too.”
Santa Barbara County’s Public Health Department reported three cases in 2011, one case in 2010, eight cases in 2009, and one case in 2008. While that’s significantly more than SLO County’s single confirmed case, it’s still not very much.
“I have patients come in worried about Lyme disease, and I say they should be more worried about driving on the Interstate during rush hour [here],” said Dr. Charity Thoman, a deputy health officer with Santa Barbara County.
She admitted that she’s no Lyme disease expert—her main area of expertise is tuberculosis—but her job does involve taking reports of Lyme disease cases in the county and making line-by-line comparisons with guidelines set by the CDC to be sure a patient meets the official definition.
Since the most prevalent initial Lyme disease symptoms are fairly common—who doesn’t suffer from muscle ache and fatigue?—part of the criteria for it to be considered an actual case involves getting a positive blood test.
“The symptoms are so vague, a lot of people are convinced they have Lyme disease … and are frustrated they haven’t been given a Lyme disease diagnosis by their doctor,” Thoman said.
A doctor would order a blood test if the patient had a history of spending time outdoors in wooded areas where there’s a known presence of a tick that spreads Lyme disease, she explained, “like New England in the summer.” Complaining of getting multiple tick bites followed by fatigue or joint pain would also trigger a blood test, as would the presence of a telltale bulls-eye-like marking at the site of the bite.
But the other symptoms alone aren’t enough.
“I frequently have patients come into my office and they tell me they have Lyme disease because they have fevers, muscle aches, and fatigue, which could unfortunately be about 2,000 other diseases,” Thoman said.
“What we can say is, even if our ticks have it … we don’t have a very high prevalence of ticks infected with Borrelia burgdorferi, so the chances of getting Lyme disease in our county are very, very low,” SLO County’s McDowell said.
Still, she noted that there are local practitioners who believe there are 10 to 15 cases a day in the county.
“We do not believe that,” she emphasized.
All of which prompts the question: If you suspect you have Lyme disease, why not just get a blood test?
Dr. Paul M. Lantos with Duke University Medical Center explained in an e-mail to New Times that the answer isn’t complicated, but it is nuanced:
“First, many people who are worried about Lyme disease DO get tested. The problem, though, is that the test … results in a false positive test roughly 1 percent of the time, and a misinterpretation of the test result (because of how labs report it) some additional fraction of the time. Now 1 percent may not seem like much, but when more than 3 million people are tested for Lyme per year, that is actually 30,000 people with false positive tests.
“How do we know it’s a false positive test? Because if the patient does not have an illness compatible with active Lyme, then the test—regardless of its result—is neither definitive nor explanatory. It’s like going to the doctor for a sore throat and getting an X-ray of your foot.”
He said that the most reliable results come from restricting testing to people with “plausible exposure” and a “plausible illness.”
“Lyme testing is not like HIV testing where the test result alone is (nearly always) synonymous with disease,” he explained. “So what this huge excess of testing produces is a lot of people who are diagnosed with Lyme who don’t actually have the infection.
“Secondly, the chronic Lyme advocates argue that the testing is very insensitive and a negative test is meaningless,” he continued. “They are not correct about this—the only stage of illness where the test is insensitive (by this I mean that there are a lot of false negatives) is early Lyme, where the rash is so distinctive that you can diagnose it without a test.”
Those “chronic Lyme advocates” he mentioned are people who believe that the modern medical community is turning a blind eye to an epidemic of Lyme disease that settles into patients’ bodies and wreaks havoc year after year, breaking down organs and systems while doctors avoid the obvious diagnosis.
Karen Fraser lives in San Luis Obispo County—which, remember, is pretty much Lyme disease free, according to the experts. She said she picked her infection up around the year 2000 when she was staying in a cabin in the Sierra Nevada near Kernville.
“One morning I woke up, and I had five bites up my right leg,” she said.
The bites developed into big, red welts, she explained, and she spent a lot of time in a Jacuzzi because it took the pain away.
“I came from an era where you took care of an insect bite with peroxide, a little airing, more peroxide … ,” she explained. “I didn’t know it had deposited its bacteria into my bloodstream.”
She eventually started having trouble sleeping—“That’s kind of how it started,” she said—but the insomnia got worse, and then she developed back and stomach pain.
Over the years, the symptoms spread. She was unable to walk for six months. Then, last October, her digestive system started shutting down. She went four weeks without eating, she said, able only to take water, protein powder, and ant-inflammatories. She was sipping broth after a month, and was back to solid foods—steamed vegetables only—by Christmas.
She believes that chronic Lyme disease is—yes—an epidemic in this area, of which doctors and others aren’t aware.
“There are many families out here that have it,” she said. “We’re just not being seen or heard by insurance companies.”
She blames, among other things, the geographic prejudice that leads experts to say Lyme disease is an East Coast problem.
“They have a fairy tale here,” she said. “They have a fairy tale.”
Fortunately, she said, there are some doctors willing to listen. She found help in a holistic health doctor in northern San Luis Obispo County, and has connected with other people who’ve suffered for years while not getting the treatment they sought.
Laurie Rossi is another local Lyme advocate. She’s worked in the area as a nurse for about 30 years, spending time in “gosh, just about every [medical] area you could think of,” she said. She was in Hospice, and surgery, and most recently worked in oncology in Templeton, until she suddenly became ill in the late 2000s, she explained, with a cascade of symptoms nobody could read.
“They told me I had fibromyalgia,” she said, but her own medical background led her to see that the signs didn’t add up to the diagnosis and its recommended prescription-based treatments.
She remembered talking to a neurologist about the possibility of Lyme disease, but she wasn’t taken seriously until she went to the Bay Area in 2009, when she received a symptomatic diagnosis, but said the prescribed oral antibiotic treatment still wasn’t what she needed—and she actually got worse.
“I was in so much pain,” she told New Times. “I was bedridden by 2010. I had trouble walking and speaking at that point. My husband would carry me to a chair—”
Her voice broke, and she fell silent for several seconds before recalling her daily activity at the time: sitting. Her immobility did, however, give her time to focus on the ongoing joint pain, the muscle spasms, the deterioration. So she made the choice to stop treatment.
“I felt if I didn’t do something about it … I wasn’t going to have a voice soon,” she said.
Rossi wasn’t abandoning any and all help. She’d previously come across work done by Dr. Ritchie Shoemaker, an East Coast doctor who’d reported that certain people have a susceptibility that makes them unable to purge their bodies of toxins that come from Lyme and molds. She said her own doctor didn’t buy it, so she went directly to the source, traveling to Shoemaker in Maryland for testing. The idea is that certain people’s genes that govern immunity responses malfunction so that when they’re triggered by a specific exposure—Lyme disease, for example—they circulate incoming toxins indefinitely instead of expelling them from the body.
Rossi admits that she never had a positive Lyme test beyond two bands, which references the complicated results from what’s known as the western blot test. Lymedisease.org explained that the test compares a pattern created by a patient’s blood with the pattern from Lyme-infected blood to create a read-out that resembles a bar code.
“If your blot has bands in the right places, and the right number of bands, it is positive,” the site reports. “Some of the bands are more significant than others, and your doctor may decide you have Lyme disease even if your western blot does not have enough bands or the right bands to be reported to the Centers for Disease Control and Prevention for surveillance purposes.”
Rossi reiterated that the best tests can yield false negatives, and maintains that she’s responded completely to therapy and following Shoemaker’s protocols, which include removing any mold exposure from the immediate environment.
Because of her own success story, she’s been working to bring Shoemaker—a somewhat controversial expert on mold, Lyme, and other biotoxins—to the Central Coast to speak on the subject to interested locals. He’ll be appearing at the Marriott Courtyard in San Luis Obispo on Oct. 21, though his scheduled arrival is already raising eyebrows.
Rossi said he was first supposed to speak at Sierra Vista Regional Medical Center, but alleged that some doctors balked and the venue had to change. In an e-mail to New Times, Sierra Vista Associate Administrator Ron Yukelson attributed the seminar location switch to a simple room conflict.
Rossi said Shoemaker was also set to speak to the San Luis Obispo County Health Commission, which has a scheduled meeting the day of his visit, but that’s no longer happening either. An e-mail to the health commission asking about that reported un-invitation yielded this response from Lynn Enns, commission chair: “The Health Commission is dedicated to providing timely and appropriate educational information as part of its agenda each month. The Health Commission would appreciate any publicity you could provide urging members of the public to attend or watch on television. The agenda for Oct. 21 is the third installment about the Affordable Care Act (ACA), as well a program on Domestic Violence in keeping with October being Domestic Violence Awareness month.”
Shoemaker has been described as a quack by some critics, and received a reprimand from the Maryland State Board of Physicians in early 2013 after it received complaints about him. The board reviewed his cases and reported finding deficiencies in his documentation, diagnostic code use, and “potentially dangerous” prescriptions.
“This is not an uncommon situation with a doctor involved in the cutting edge of research,” Rossi told New Times.
An e-mail sent from New Times to Shoemaker via his website, survivingmold.com, prompted a short response: “I am sorry but Dr. Shoemaker can not discuss the 2012 reprimand. Thank you for asking.”
This is obviously a controversial subject, but the main debate—which one writer with the American Lyme Disease Foundation addressed in an essay titled “Ending the Lyme Disease Wars”—boils down to what “chronic Lyme disease” is or isn’t.
As Duke’s Dr. Lantos wrote: “The controversy over Lyme disease is certainly not new. It largely pertains to ‘chronic Lyme disease,’ which is not a clinical condition that is recognized by the mainstream clinical or scientific community, including the IDSA. Chronic Lyme disease is a confusing term, because it lacks any sort of agreed-upon definition. When researchers have studied people who receive a diagnosis of chronic Lyme disease, what they find is that very few of them have evidence of ever having had Lyme disease; virtually all of them either have an alternative medical diagnosis that has been misclassified as chronic Lyme disease, or they have prolonged and disabling symptoms such as fatigue and pain, but have not found a medical explanation.”
Those are frustrating words to someone like Rossi, who said, “If you have cancer, you either recover or you die. This is like living death, to be honest with you. … It takes away everything in your life.”
Still, there are glimmers of hope for the people trying to make their voices heard among a crowd that disagrees with them—or simply doesn’t listen. Lantos wrote that he’s interested to see how the eye-opening, 300,000-numbering study is going to impact awareness of Lyme’s geographic distribution.
“For people working in highly endemic areas, say coastal New England for example, this study will probably not affect practice at all,” he wrote. “At the end of the day a doctor is only seeing one patient at a time, and a decision about whether to consider, test for, diagnose, or treat Lyme disease has to be made on a case-by-case basis. On the other hand, in areas where Lyme disease is rare but may be emerging, this study may open doctors’ eyes to a disease that may be more common in their neighborhood than they had ever realized.”
Contact Executive Editor Ryan Miller at firstname.lastname@example.org.