Lyme disease strikes about 300,000 people each year, according to new information released by federal health officials. The new estimates suggest the disease is 10 times more common than previously thought.

Because Lyme is so common, doctors often assume it is the sole problem in patients with tickborne infection, not recognizing newer diseases, says Durham’s doctor, Daniel J. Cameron, M.D., an internist and epidemiologist in Mount Kisco, New York, and past president of the International Lyme and Associated Diseases Society. It’s possible that undetected coinfections could help explain the medical mystery that is known as category 4, or “chronic,” Lyme. Some sufferers contend their symptoms continue to affect them after the standard treatment of two to four weeks, but not all doctors believe Lyme persists.

Although Lori had tested negative for Lyme disease in 2009, two years before her tics started, Dr. Daniel Cameron said he diagnosed her with it in 2012 based on blood tests and her medical history, which included a swollen knee, the year she was tested for Lyme. Cameron said Lori probably had a false negative test in 2009, and that the bacterium had smoldered and gotten worse over time, causing neurological symptoms.

Daniel Cameron, president of the International Lyme and Associated Diseases Society, speaks for the counterculture. He believes that “thought leaders” in the medical community prevent acceptance of what he considers strong evidence that Lyme is both underreported and ineffectively treated. “Even though the evidence is accumulating [that Lyme can be chronic], doctors have a tendency to have to wait for a thought leader to change their mind, otherwise they’ll get criticized, or the medical board might drop the ax on you,” he says. “Off with your head! So it becomes high risk to become a doctor who treats chronic Lyme. Most doctors don’t want to have to.”

“We need to continue to understand the range of infections that may be passed along in a tick bite such as Babesia, Anaplasmosis and Ehrlichiosis. Insurance companies must recognize the risk of chronicity and the severe manifestations of Lyme disease in the lives of the patients they insure.”

“Lyme disease can be difficult to recognize in children,” says Dr. Cameron. “Children frequently become ill with viruses and infections and as a result the disease manifestations particular to Lyme can be missed.” It’s important for a child to get tested for Lyme disease when puzzling symptoms first manifest, before the illness gets a chance to progress to its late or chronic stage. If you suspect your child may be suffering from Lyme symptoms, he or she should be tested for all conceivable root causes of their problems—including the possibility of tick-borne diseases. Don’t forget, too, that a single tick bite can infect children with multiple tick-borne illnesses, making accurate diagnosis even more difficult.

The number of cases is at 300,000 per year and rapidly climbing. Even more alarming: If it’s not caught quickly, the illness can have irreversible effects on your health. WH uncovered eight surprising truths about this scary scourge, and strategies for protecting yourself. Turns out, it’s about so much more than ticks. The tiny suckers are just the transporters of a disease that new research suggests is an incredibly wily adversary. For one thing, it’s uberhard to diagnose. That infamous bull’s-eye rash may show up in only 20 percent of infections; you might also get a roundish red blotch, or nothing at all. For another, the most common blood tests may not be all that accurate. Then there is the fact that scientists don’t fully understand the ins and outs of Lyme bacteria, and, oh yeah, it seems to be spreading—fast.

The International Lyme and Associated Diseases Society released new updated guidelines last week for the treatment of Lyme and other tick borne infections. The new guidelines say current antibiotic protocols used by many physicians to prevent or treat Lyme disease are inadequate, leading to an increased risk of Lyme disease developing into a chronic illness. The new guidelines move away from designating a fixed duration for antibiotic therapy for tick borne illnesses. Instead, it encourages clinicians to tailor therapy based on the patient’s response to treatment, the guidelines’ lead author Dr. Daniel Cameron said in press release.

“New York physician Dr. Daniel Cameron MD MPH is a primary care physician and epidemiologist who has treated Lyme disease patients for close to 30 years. Cameron says that he relies more on a patient’s symptoms to diagnose Lyme disease than on diagnostic tests because, he says, the tests are not always accurate.”

Dr. Cameron says, that parents and clinicians can mistakenly blame behavioral or cognitive symptoms on a variety of factors such as the child’s developmental stage, mononucleosis, depression, or even spending too much time on cell phones. Too often, and this can be tragic, it can take years of misdiagnoses and misunderstanding before parents know what’s troubling their child, and by then the disease has become chronic. Because some of their symptoms, such as irritability, joint aches and difficulty concentrating, can mirror “growing pains,” legitimately sick children are often overlooked, told that their problems are “all in their heads.” Parents and teachers may suspect the child or adolescent is simply trying to avoid schoolwork, daydreaming, or acting up, when, in fact, one or more insidious tick-borne illnesses might be the cause.

Dr. Daniel Cameron, an internist and epidemiologist based in West Chester County in upstate New York, attributed the universal negative experiences of Lyme patients to ignorance within the medical community regarding the varied symptoms related to the disease.

“At least 20 to 40 percent of Lyme patients are still sick long-term after initial treatment,” he said. “A lot of doctors don’t see the complexities of Lyme in their offices on a regular basis.”

At about the same time, the family heard about a Lyme disease specialist, Dr. Daniel Cameron, in Westchester County. Christine saw him for the first time in May. Cameron began including Lyme disease cases in his primary care practice 25 years ago, after treating three patients who developed the illness.

Dr. Cameron thinks doctors who have different views on Lyme should engage in more dialogue. That way, patients who are already suffering from confusion and physical pain won’t be caught in the controversial crossfire. We rely on doctors to tell us what’s wrong with us when we’re sick, so the fact that so many cases of Lyme—or something that looks like Lyme—fall into a gray area is maddening.

“Patients who have had Lyme disease for longer than 4-6 weeks … will almost always test positive,” the agency’s web site declares. “Especially,” it says, in “later stages.”
“False,” said Dr. Daniel Cameron, a Westchester County epidemiologist and internist who believes, like other Lyme-treating physicians, that the CDC overstates the ease of diagnosing Lyme and creates false confidence among doctors in the so-called two-tier test.

Dr. Daniel Cameron of Mount Kisco, New York—in the heart of Lyme country—has been studying tick-borne disease since 1987, and is president of ILADS. He says that because patients have such a range of symptoms, they start out by going to specialists not knowing the symptoms are connected. However, many doctors in and out of the infectious disease community do not acknowledge Lyme as a chronic condition. Both the CDC and the Infectious Disease Society of America (IDSA) call it “post-treatment Lyme disease syndrome.” The belief is that calling Lyme a “chronic” disease it is not based on scientific fact.