Feature: Memoirs of an invisible malady
The bite on Lyme disease—does mainstream medicine have blood-suckers on its hands?
Not the kind of attraction you see promoted in a lot of Northern California visitors' guides...
Image courtesy Andy Abrahams Wilson from the film, "Under Our Skin."
Posted: Thursday, May 16, 2013 9:00 am | Updated: 1:39 pm, Fri May 17, 2013.
Jane has a life that many would envy. A solid marriage, a successful husband, two healthy children and a lovely Greenbrae home.
But, underneath the cheery veneer is a secret.
Jane, 43, looks normal to the outside world—however, she is suffering from a myriad of debilitating symptoms including numbness in her extremities, severe headaches, extreme fatigue, joint and bone pain, increased urination, memory loss and dizziness.
Since the onset of her illness on Labor Day in 2010, which she initially believed was the flu, she has seen 14 doctors in Marin and San Francisco. Some physicians ordered tests, others wrote out prescriptions for pain and sleeping medications. She received diagnoses that ranged from encephalitis to "stressed out mom." "Every time I left a doctor's office, I felt defeated, unheard," Jane says.
Last month, Jane had an appointment with a 15th doctor and was tested for Lyme disease. The results came back positive. "I'm grateful to finally have a diagnosis and looking forward to starting treatment," she says.
It would be a good story if it ended here. However, the mysteries of Lyme are still unraveling. It is often difficult to tell fact from fiction and there seems to be a stigma associated with the disease. In fact, Jane and her family are not using their real names for this article.
"There's a firestorm surrounding Lyme that I don't understand," Jane says. "I think it comes from a lack of education in our community."
So, let's get educated. Lyme disease is an infection caused by Borrelia burgdorferi, a spirochetal bacteria related to syphilis. It is transmitted to people by the bite of an infected tick. In California, the culprit is the western black-legged tick (Ixodes pacificus), and both the nymph and adult are able to spread Lyme. The bacteria-laden bloodsuckers are our neighbors, according to a 2012 report by the Marin/Sonoma Mosquito and Vector Control District. Testing of black-legged ticks in Marin revealed that 3.9 percent of the nymphs and 2.3 percent of the adults are infected with Lyme.
Once a person is infected by a tick, a rash may appear in a bulls-eye pattern, which is a classic indicator of the disease. Some people develop other types of rashes and flu-like symptoms including fever, chills, body aches, fatigue and headache. When caught at this initial localized stage, most doctors agree that a patient will fully recover with a two-to four-week course of antibiotics. Left unchecked, the infection can spread to joints, the heart, and the nervous system within weeks, months or even years after the tick bite.
Unfortunately, Jane, like many Lyme patients, never realized that she had been bitten by a tick and had never noticed a rash. Flu-like symptoms were dismissed as the flu. Though her infection spread, there were periods when she was symptom-free. Other times, she was bedridden. Certainly, these factors complicated the diagnostic process in her case, yet it took almost three years to pinpoint her problem.
Ben, her husband, feels frustrated. "Jane and I both thought it was Lyme early on," he says.
"The doctors kept saying there's no Lyme in California. There's no Lyme in Marin," Jane explains.
•••••
LYME DISEASE IN humans does exist in California and Marin. The Centers for Disease Control (CDC) reported 79 confirmed cases and 13 probable cases of Lyme disease in California in 2011. According to the California Department of Public Health (CDPH) there were 27 cases in Marin from 2001 to 2011. The Marin County Health and Human Services confirmed that two cases were reported last year.
"It's estimated that Lyme is underreported by about 10 times," says Dr. Todd Maderis, a practitioner at Marin Natural Medicine Clinic in Larkspur. Maderis and fellow practitioner Dr. Jacqueline Chan are well versed in the incidence of Lyme disease in Marin. Many of their patients have been diagnosed with it.
They believe that the great divide among doctors stems from differing viewpoints about how the infection is diagnosed and treated.
"There are three points of contention with the testing for Lyme," Maderis says. "Routine Lyme testing is a two-tier method. If you run a Lyme panel through a lab like Quest or LabCorp, they run an ELISA [enzyme-linked immunosorbent assay] test. If it's negative, it's negative. If it's positive, then it reflexes to a Western blot test. However, the ELISA test has been proven to be very insensitive. It's 47 percent sensitive in some research."
That means about 1 in 2 people aren't testing positive on the ELISA, when they should—and therefore aren't administered a Western blot test, a staining technique that detects certain proteins in tissue and cells.
"We only order the Western blot because we consider it the gold standard," says Maderis. "The second point is that IGeneX, a specialty Lyme testing laboratory, looks for 12 bands (antibodies), where other labs look for five bands."
The third point of contention, Maderis says, is that Quest and LabCorp use only the commercial strain of the bacteria, while IGeneX uses both the commercial strain and a wild strain of the bacteria. "So, the standard labs keep coming back with negative test results, which continues to reinforce to conventional doctors that Lyme doesn't exist."
According to Maderis, Quest and LabCorp adhere to the CDC criteria when testing for Lyme disease and IGeneX has its own criteria. Some doctors believe that the CDC criteria are too narrow, which is problematic when considering whether Lyme is prevalent in an area.
"The state requires reporting of Lyme cases," says Dr. Julie Griffith, a neurologist in San Rafael who treats Lyme patients. "The reporting is sent to the Marin County Health Department. If you don't meet all of the CDC criteria, then the report may be rejected. That contributes to the low reported number of cases."
Shanna Cronan, senior public health nurse at Marin County Department of Health and Human Services, confirms that it all comes down to how Lyme is officially defined by the CDC.
"Doctors are required to report Lyme disease—if it meets the case definition," says Cronan.
The CDC endorses guidelines developed by the Infectious Diseases Society of America (IDSA), an organization that represents physicians, scientists and other healthcare professionals who specialize in infectious diseases. "The International Lyme and Associated Diseases Society [ILADS] has a completely different viewpoint on Lyme," says Chan.
The two professional organizations don't just disagree about testing. The proper treatment for Lyme disease treatment is also in dispute. "[The Infectious Diseases Society] doesn't believe Lyme chronically persists," says Maderis, "Many refute that."
The International Lyme society, however, recognizes the existence of chronic Lyme disease and the need for long-term use of antibiotics, says Chan.
•••••
SAUSALITO FILMMAKER Andy Abrahams Wilson could write a film script on the politics surrounding the disease. In fact, he did. Wilson spent more than three years researching Lyme, culminating in the award-winning documentary Under Our Skin.
Under Our Skin asserts that the Infectious Diseases Society of America's 2006 guidelines for Lyme were written by a panel, and the majority of panel members, according to the film, had conflicts of interest, mostly monetary. The Connecticut Attorney General investigated and found problems in the IDSA Lyme guideline development process. A settlement was made and the IDSA was required to convene an unbiased panel to review the guidelines. The new panel, however, affirmed the 2006 guidelines.
"It was skewed from the beginning," Wilson says. "The new panel was handpicked by the IDSA. It's like Enron choosing its own jury. They also said that anyone who receives over $10,000 a year from their practice around Lyme was disqualified. You can look at that as preventing conflicts of interest, but the specialists were not allowed to be on that panel. The people working day in and day out with Lyme disease were not allowed to be on that panel."
The 2006 guidelines, which are currently endorsed by the Centers for Disease Control, remain unchanged. Controversy rages between the IDSA and Lyme advocates. A few even point to a government conspiracy. Wilson doesn't believe in conspiracies.
"It's not so much a medical or scientific question, as it's a political one," he says. "These people [IDSA] do not want to say that they're wrong. It could have a catastrophic impact on their livelihood. There could be lawsuits. They're protecting themselves."
In the meantime, many people with Lyme remain undiagnosed or are misdiagnosed, because the majority of physicians follow the CDC criteria based on the Infectious Diseases Society of America guidelines. It happened to Jane and it happened to the people Wilson followed in his film.
"My assumptions were that Lyme was an East Coast disease and that it wasn't very serious," Wilson says about the affliction named for the Connecticut towns of Lyme and Old Lyme, where the disease was first identified in 1975. "I was shocked to find out that it's life threatening, similar to syphilis and it's right here in our backyard, Marin County. I want to shock people into awareness about Lyme disease, but I don't want people to be afraid of nature, the outdoors."
Dr. Griffith concurs. "Lyme disease is a pandemic. In 2010 there were 48,000 documented cases in the U.S. Only one in 10 are diagnosed. Ninety percent of the people with Lyme disease do not know it or cannot secure a diagnosis. The criteria used by the CDC to make the diagnosis are too stringent."
Maderis, Chan, Griffith and Wilson all agree that Lyme diagnosis should rely on specialized testing plus the clinical presentation to make the diagnosis. They're also in agreement that Lyme is a complex disease that may become chronic if not treated early.
"If you think you were exposed to Lyme disease, you need to find a Lyme-literate physician and get the more reliable tests for Lyme," advises Wilson. "Just because a physician says we tested you for Lyme and you don't have it, or because a physician says we don't have Lyme disease in Marin, doesn't mean you don't have it. It's really about patients becoming informed and aware and that's a threat to the patriarchal medical system."
Jane starts her treatment for chronic Lyme disease this week, which will involve long-term antibiotics. "Hopefully," she says, "I can beat it and get back to my life."
http://www.pacificsun.com/news/cover_story/article_43c787e2-bdb1-11e2-ab4b-001a4bcf6878.html
