The Dangers of Lyme Disease in New England

New England is a hot bed for Lyme disease, so here’s how you can avoid ticks to keep yourself healthy.

Tick image via Shutterstock.

Tick image via Shutterstock.

In 2011, 96 percent of Lyme disease cases were found in the states of Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Vermont, Virginia, and Wisconsin. Notice a trend? Lyme disease is most prevalent in New England and along the East Coast. In 2011, almost 2,500 people in Massachusetts were diagnosed with the disease.

“Lyme disease is contracted from the bite of an infected tick,” says Dr. Mark Klempner, a specialist in infectious diseases from the University of Massachusetts Medical School. “Ticks are most active during the months between May and September, and areas like New England are often heavily infected. However, Lyme disease can also be acquired during other months of the year, too, depending on the activity of infected ticks.”

You probably know that you should check your pets for ticks, but the small insects can be incredibly dangerous for humans, too. Ticks, which are the size of a pinhead and have painless bites, live on deer or mice. They can cause Lyme disease, a disease often identified by a “bulls-eye” rash that spreads from the center, or by the low-grade fever, headache, stiff neck, and body aches that accompany that rash. Those symptoms usually appear within 3 to 30 days after a bite from an infected tick, but some people won’t notice symptoms until they start feeling more the serious effects of the bite, like arthritic symptoms, nervous system problems, or the slowing of the heart rate.

“A lot of people don’t know how significant and debilitating Lyme disease can be,” says Susan Neuber, director of the Lyme Center of New England. “The message should be that Lyme disease is not always easily detectable or easily treatable. People often have vague symptoms that we associate with other disorders, but they eventually figure out that they have Lyme disease instead.”

The symptoms of advanced Lyme disease can range from a basic rash to cognitive problems, like memory loss, concentration issues, and brain fog. Some people get numbing, tingling, and burning feelings. Some patients even experience gastrointestinal distress. Neuber says that doctors are quick to diagnose children with ADD, but patients in her clinic have demonstrated struggles with concentration in the classroom because of Lyme disease, not ADD. “I’ve seen numerous patients who have had expensive gastrointestinal workups, too, and the doctors can’t figure out what’s wrong,” she says. “It’s Lyme disease.”

Doctors are sometimes able to diagnose Lyme disease based on blood tests, but clinical assessments seem to be more effective, according to Neuber. “I ask people, do you have animals, are you active outdoors, do you live in an endemic area like New England, do you have symptoms consistent with Lyme, have you ruled out other disorders like arthritis or an autoimmune disease, what does your blood test look like,” she says. “Then I use that to assess risk and likelihood of disease.”

The good news is that Lyme disease can usually be treated with antibiotics. Most practitioners believe that a month of antibiotics will cure Lyme disease, but some believe that patients should continue treatment for as long as they experience symptoms, especially because people with Lyme disease often have other illnesses transmitted from the same ticks that carry Lyme. Boston.com recently reported on a woman who was diagnosed with a rare bacterial illness and flu-like symptoms, all transmitted through a tick bite. “People who have Lyme often have other parasites or bacterial infections from the tick bite,” says Neuber. “So I believe that it’s important to treat the individual for their symptoms using different medications for the different types of diseases. Still, this can be controversial, even in the literature. There are definitely two schools of thought.” Either way, however, Lyme disease is usually curable, albeit slightly difficult to diagnose.

Why is Lyme disease so prevalent in New England? There is a large deer population here, and deer tend to spread the disease. Plus, Lyme disease is thought to have originated in Lyme, Connecticut long ago. Although time has passed and populations have spread, the disease still tends to be localized near its origin. According to the Lyme Disease Association, Massachusetts remains one of the states most at risk for Lyme disease, and Neuber says that the numbers from the association are even a gross underestimation of the actual count.

“Due to a lack of physician reporting and unrealistically stringent reporting criteria, these numbers are usually incorrect,” she says. “The rule of thumb is to multiply the total count by 10.” If that’s the case, more than 25,000 Massachusetts residents were affected by Lyme in 2011, a number which will likely grow in 2012 and 2013, according to the Lyme Disease Association. New estimates from the CDC this week put annual Lyme infections at 300,000 nationally, 10 times more than previously thought. People who spend time outdoors or at the beach in New England are most likely to be affected, although Neuber says that even people working in their front yards or children playing soccer are at risk for the disease.

Although Lyme disease is more common during the summer months, Christmas trees can carry ticks, too, because deer often rub up against the trees before the trees are taken to lots. To prevent Lyme disease and to avoid other diseases carried by ticks, like Rocky Mountain spotted fever, the Center for Disease Control and Prevention recommends reducing exposure to ticks. Avoid wooded areas, and walk in the center of trails while hiking. Wear bug spray, and examine yourself for ticks after spending time outdoors. Also make sure to check your pets for ticks when they come indoors, and ask your vet to check your pets for ticks, too. Dogs, in particular, are susceptible to tick bites and tick borne diseases.

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  • Georgia Lyme Disease Associati

    Thank you for your article, however as a reporter, you made one fatal flaw. You didn’t investigate the facts. While it is true that 96% of the REPORTED Lyme disease cases appear in the Northeast, state reporting practices differ so drastically, the case numbers are impossible to compare. What is routinely diagnosed and reported as a case of Lyme disease in the states cited in your article, is dismissed and never reported every day in states across the South.

    A report presented to the Institute of Medicine’s Tick-borne Disease Advisory Committee showed that 70 percent of reported cases are RASHES ALONE – no positive test result or recall of tick bite needed. Yet, in states in the South, rashes alone are not reported as cases.

    Thousands of southern patients annually report these rashes and many of those report they and/or their family members have contracted Lyme disease…some more than once! But their cases never show up on the books. Thus, there is no way to compare statistics when what is reported as a case in one state is readily dismissed in another.

    In the southeastern USA, more Lyme Borrelia species and strains have been identified by scientists than in any other region of the country. But the CDC discourages medical providers from even testing a patient outside the Northeast or Midwest, ridiculously claiming that doing so increases chances of false positives (all the while claiming how terrific the tests they recommend are). Have you ever heard of such a magic, regionally specific medical test that only works in one area? Current tests are not designed to detect some of these strains, they’re only meant to detect one strain of one species of Lyme bacteria – a problem which has been ignored for years.

    Again, reporting practices have prevented thousands, if not millions, of cases outside the northeastern USA from showing up on the books. Because this isn’t disclosed, ctizens and medical providers alike are dangerously led to assume that Lyme disease isn’t a problem in an area. (But when we hear from people contracting Lyme 2 and 3 times and families with multiple members infected, we know this disease doesn’t qualify as “rare” in a region.) If reporting practices were the same in all states and tests were created to detect the diverse southern Lyme Borrelia strains, how many cases would we really find? – Liz Schmitz, Georgia Lyme Disease Association GeorgiaLymeDisease.org

  • FLDA

    In recent news coverage, including this article, we often hear the statistic that “96 percent of Lyme Disease cases were concentrated in 13 states.” So called “experts” go so far as to say that it is a “myth” that Lyme Disease occurs in all 50 states. This conclusion is not only false, but also may lead to catastrophic consequences when people, the highest percentage of which are children, fail to get diagnosed early on due to reliance on such falsehoods.

    First, it is critical to note that not all states receive federal funding to specifically track Lyme Disease. Not surprisingly, all 13 of the states with the highest reported cases also receive federal “Lyme Disease” grants for Epidemiology, the tracking of Lyme cases (along with 2 other emerging states). http://wwwn.cdc.gov/fundingprofiles/ Thus, while most “reported” cases for Lyme Disease are in the Northeast, cases in the other areas such as the South remain vastly underreported. In addition to the disparity of federal funding:

    When a doctor thinks a disease is “rare” in a geographic region, it is not on his/her diagnostic radar screen. The failure to timely test for and diagnose Lyme Disease in in its early stage potentially causes patients to needlessly suffer permanent damage and/or a much more difficult to treat, persistent infection. Even with CDC positive Lyme Disease tests and a clear clinical presentation, patients have reported that their doctors insist that the results must be a “false positive” because the patient had not recently travelled to the Northeast. Meanwhile, these same patients improve on antibiotic treatment for Lyme Disease.

    Likewise, when citizens of southern states think that Lyme Disease and other tick born infections are “rare”, they do not take routine precautions such as performing daily body checks for ticks, spraying skin and clothing with tick repellant and avoiding tick habitat.

    The warm, humid climate in the Southeast results in year round tick activity.

    In the Southeast, there are numerous strains of Borrelia burgdorferi (the bacteria that causes Lyme Disease), including two newly discovered strains as outlined in the recent groundbreaking research by Dr. Kerry Clark. Importantly, these strains are not covered by traditional lab tests, which screen for a single strain. Thus, individuals in the Southeast are more likely to obtain false negative lab results. Dr. Clark has found Lyme infected ticks throughout the Southeast.

    In practice, the Southeast requires a heightened standard for reporting Lyme Disease cases. For example, whereas Georgia was the fourth leading state for Lyme Disease cases in 1989, the reported cases steeply declined after the change in reporting criteria.

    The CDC has repeatedly refused to recognize clear-cut cases of Lyme Disease outside of the Northeast by coining a new name, STARI, a “Lyme like” illness which is not counted in reporting figures. See research by Dr. Masters and the highly acclaimed book Cure Unknown for more on this topic.

    In 2011, our own son was repeatedly refused Lyme Disease testing for nearly a year because we did not recall a tick bite and had not recently travelled to the Northeast. During this timeframe, our son’s symptom list quadrupled to over 40 symptoms rendering him too weak to attend school, play sports or even walk many days. He spent many days in the hospital and suffered excruciating migraines that could only be relieved with morphine due to Lyme meningitis. As a result of the delays
    in diagnosis of Lyme Disease and numerous co-infections, he suffered needlessly and missed half of sixth grade of school. Dr. Kerry Clark has found Lyme Disease infected ticks all over our home town of Jacksonville, Florida. We have deer in our suburban neighborhood yard on a daily basis. Lyme Disease is not rare in Florida, but rather, it is poorly recognized and vastly underreported. Our family’s experience is the rule, not the exception. There are countless others who share the same fact pattern many of whom have not travelled out of state.

    After decades of insisting that Lyme Disease was rare, the CDC has now conceded that they were grossly wrong, underreporting at least 270,000 cases per year, 90% of all cases. How many patients outside of the Northeast will be robbed of their health, livelihoods and childhoods before the CDC is forced to admit that Lyme Disease is not rare outside of the Northeast after all? Where is the accountability?