WBUR

How Much Lyme Disease Are We Living With?

The Blacklegged tick, commonly referred to as the deer tick, is prevalent in Massachusetts. (AP)

“If you ask anyone in the state of Massachusetts,” said state Rep. David Linsky, “they know someone who has had Lyme disease, either in their family or someone that they’re close with. It’s a huge problem in Massachusetts.”

But exactly how big is huge? How much Lyme disease is there in Massachusetts? And where?

Here’s the official number: Dr. Catherine Brown of the Massachusetts Department of Public Health said there are 2,000 to 4,000 confirmed cases of Lyme disease in the state each year.

“We consider Lyme disease to be endemic across Massachusetts,” Brown said. “It’s found everywhere. Among the infectious diseases that are tracked in Massachusetts, only the hepatitis viruses and the sexually transmitted diseases have more cases than Lyme disease.”

But Brown said the official number of cases doesn’t fully capture reality.

“Among the infectious diseases that are tracked in Massachusetts, only the hepatitis viruses and sexually transmitted diseases have more cases than Lyme disease.”
– Dr. Catherine Brown,
Mass. Dept. of Health

“We receive every year between 12,000 and 14,000 lab reports on Massachusetts residents where they’ve tested positive for Lyme disease,” she said. “That gives a better idea of the actual numbers of the burden of Lyme disease than when I tell you we’re able to confirm 2,000 to 4,000 of those cases.”

Brown said an officially confirmed case is one with both a positive lab test and symptoms, like the telltale “bull’s-eye” rash, documented by a doctor. But many patients who are diagnosed with Lyme disease never get a lab test. And nobody knows exactly how many of those patients there are.

Take Martha’s Vineyard, for example: In 2010, there were only 25 officially confirmed cases. But a survey of island pharmacies by a team of University of Massachusetts students indicated that over 1,000 prescriptions for antibiotics were filled to treat Lyme disease that year.

Professor Sam Telford of Tufts University’s Cummings School of Veterinary Medicine, a leading researcher on tick-borne diseases, said that in coastal Massachusetts, in general, about one in 100 people will get Lyme disease each year.

Click to enlarge: This map was released by the Yale School of Public Health in February. (AP)

In the rest of the state, he said, “That is changing. In the MetroWest 495-128 corridor, five or 10 years ago I would have said it’s only endemic with a few hot spots. Now it is approaching prevalence such as what we see on Cape Cod or the Islands.”

Telford said that in some hot spots, three to five out of every 100 people have caught Lyme disease in a year.

“But this is not uniformly spread across Massachusetts,” he said. “It’s in very selected sites, and those sites may change from year to year, depending on the local conditions.”

A year ago, the state Legislature created a special commission to study the incidence and impact of Lyme disease. One of its first orders of business is to get a better sense of how common the disease is in the commonwealth, and it’s taking a hard look at how new cases are being reported.

Before 2011, each town’s Board of Health was responsible for reporting cases of Lyme disease to the state. Then, the Department of Public Health shifted that responsibility to doctors.

“That’s probably where most of the under-reporting occurs,” Brown said. She said that when doctors diagnose Lyme disease without a lab test, they may not remember to report those cases to the state.

“And we’re certainly doing some outreach with some of our physicians to help understand ways that we can make that easier for them,” she said.

“The biggest problem, I’ve found for years, is that the doctors are so busy during the summer, they don’t have the time to look around, make a phone call, fax in a form,” Telford said.

In this photo released by the Centers for Disease Control and Prevention, the rash in the pattern of a “bull’s-eye” manifested at the site of a tick bite. (AP)

Telford is a member of the new Lyme Disease Commission. He said the commission is developing a menu of ways to improve reporting. One they plan to test soon is a pad of Lyme disease reporting teleforms that can sit on a doctor’s desk, like a prescription pad, all ready to be filled out and faxed to the state.

Bill Hanage, an associate professor of epidemiology at Harvard’s School of Public Health, said it’s critical for the state to know both the prevalence of Lyme disease — how many people have had it — and also the incidence: how many new infections there are, to project the future trend.

“To really frame a response, to get an idea of what the threat is, to be able to apportion scarce funds, and also to be able to communicate risk to the public, it’s important to know just what the burden of the disease is,” Hanage said. And one more reason: “It’s very important in terms of feedback for interventions.”

Right now, you might be wondering whether you’re about to step into a Lyme disease hot spot when you go outdoors, and whether you need to take measures like using insect repellent and checking for ticks. Telford has this suggestion: “You assume that you have ticks in your yard, and you act accordingly to prevent.”

Readers, you’re invited to attend a panel discussion on June 28 on preventing and coping with Lyme disease, moderated by CommonHealth co-host Carey Goldberg. On Friday, our series, “Living with Lyme,” continues with a report on how doctors diagnose Lyme disease, and a discussion of the controversy over its long-term effects.

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  • Alexander Davis

    Here is a problem:  a confirmed case is one with both symptoms and a positive blood test.   The CDC website (under FAQ) states that people given antibiotics early may not produce enough antibodies to have a positive test.  Certainly we know that early treatment is key to preventing chronic symptoms. 

  • South of Boston

    I just listened to the article and looked up the map of Lyme in my town. From the people I know and my family and neighbors, this tally seems radically underreported. I have to agree with the article that since dr.’s are required to report, they are probably too busy to get around to it. I KNOW the numbers in my town is probably higher by multiples than what is shown here.

  • Guest

     Here’s another problem. Your dog can get vaccinated against Lyme but no pharmaceutical company is currently manufacturing the safe, effective, FDA approved lyme vaccine for people. Too many lawsuits, too many people falsely/incorrectly claiming they got lyme from the vaccine.

    • Alexander Davis

      How safe the Lyme vaccine was is debatable.   Some MD peddlers had undisclosed financial interests in it.  Was it safe for those already infected?   How many people are unaware that they have been infected?  Since Lyme can cause autoimmune arthritis, did the vaccine do this?   Did it exacerbate preexisting autoimmune arthritis?   Have these questions been answered satisfactorily by those with no vested interest?  

  • Jessica

    I almost wonder if the map only represents where the patient’s doctor is located and where the disease was reported from.  For instance, in Western Mass and the hilltowns, where I live and where there are many, many oppurtunities to come in contact with ticks, there are very few “reported” cases.  But if you look at Northampton and Springfield, there are higher numbers, which would be where the hospitals are. 

  • http://www.facebook.com/people/Tessa-Mccall/730211001 Tessa Mccall

    The reality is lyme disease is a problem in the United States as a hole.  Admitting there is a problem is the first step in finding a resolution.  Three ticks on my property in 2011 – all three deer ticks and all three tested positive for bacteria that causes lyme disease.  I am in Texas.

  • Jerryleonard999
  • Jerryleonard999

    very interesting maps:

    Did Lyme Disease Come From Plum Island?
    https://sites.google.com/site/jerryleonard999/home/the-center-of-the-bull-s-eye

  • Liz

    The lab test does not indicate Lyme DISEASE. It tests for the presence of antibodies in a person’s blood, evidence that they have been EXPOSED to the microbe and mounted an immune response. I would test “positive” for chicken pox because I had it once. I would also test “positive” for Hepatitis B because I had the vaccine.

    The term “disease” properly refers to people with clinical manifestations of the illness. Many who test positive are perfectly healthy. This may seem like a small distinction but we shouldn’t be calling people sick who aren’t.

    • http://www.facebook.com/people/Tessa-Mccall/730211001 Tessa Mccall

      Liz Yes they might test positive and appear completely healthy, but it wont last because eventually your immune system will be in over load and you are in serious trouble by this stage.

  • Kmrlynch

    LIZ, YOU ARE VERY LUCKY YOU THAT YOU DON’T HAVE TO STATE THAT YOU DO NOT TEST “POSITIVE” FOR LYME….

  • Lymeticktest

    I own and operate MassDeerService, Inc.  We are now distributing the first at-home test kits for determing if the tick that just bit you is carrying the bacteria that cause Lyme.  Please visit http://www.lymeticktest for more info.

    • Dr_Alex

      As I understrand this is not the place for advertisement. Please, provide data that your claim is true.

    • Alexander Davis

      Thank you for your deer removal service.   As stated at yesterday’s panel discussion, deer ticks from one deer/year can produce 450,000 eggs!   That’s a lot of potential Lyme victims.  In 1930 there were 300,000 deer in the US and now there are 30 million.  The epidemic of deer has caused the epidemic of Lyme.   

  • Got bit twice

    One of my doctors determined that I had lyme. However, I saw a copy of the letter that they mailed to the state after the lyme test and it was checked off as negative for lyme, even though my doctor read it as positive. I believe that lyme is under-reported. 

  • http://profile.yahoo.com/FMC567LV2V5THDC7AWDJZSZ3NM Alexander

    At the panel discussion Rep. Linsky pointed out the power of the so-called animal rights lobby which opposed decreasing the deer population to control Lyme disease.   In 1930 there were 300,000 deer in the US. Today there are 30 million. We have lost our rights.  We can no longer enjoy nature, and we watch people fall one-by-one from Lyme disease. We are fencing ourselves in and dousing ourselves with potentially harmful pesticides.   Ticks from just one deer produce 450,000 tick eggs per season, as reported at the panel discussion.  No wonder Lyme disease is out of control.  And these deer ticks carry other diseases as well.  On Monhegan Island Maine, there was a Lyme epidemic but it was stopped by eliminating the deer.  The deer lobby tries to blame the mice, but the adult ticks necessary to perpetuate the species will not feed on a rodent.  

    • http://www.facebook.com/people/Tessa-Mccall/730211001 Tessa Mccall

       Its the nymp tick that feeds on rodent and transmits the bacteria.  The deer is mode of transmission, but so are squirrels, foxes, and other animals of the wilderness.  Recent report shows there is a link to the coyotes.  You cannot get rid of the animals of the forest this would disrupt the ecosystem, but something needs to be done to get rid of the tick which is a nusiance and illness spreader and nothing else

  • Aprilmay

    I currently got diagnosed with Lyme disease . I’m on my second round of doxycycline and have 1 more day left. But unfortunatly I can still feel the lymebthroughout my body and know I will continue to or soon put back on meds. I’m scared – I’m a cheerleader and am very active , my ankle gave out on me yesterday and I’m afraid it might be downhill from here – I can only hope and pray – aprilmay576@aol.com

  • averageanne

    12 years ago I had Bullseye rash behind my left knee. Noticed the area felt warm to touch. Went to Doctor and was put on anti-biotic for 3 weeks. Had depressive symtoms for 3 weeks while taking the medication. This side affect information was in the package!

    • Steph

       I also had depression from Doxy,which is supposed to be prescribed to treat acne. Lyme aware doctors claim that depression and anxiety are related to the Lyme disease not a reaction to the drug.

  • http://www.facebook.com/people/Tessa-Mccall/730211001 Tessa Mccall

    I was tested in August 2008 after unrelated symptoms.  One week it was what I thought was a UTI.  Then next week sinus infection, then headaches (and I am talking about wierd headaches – horrible like my brain was about to explode) then came the 16 pounds of weight loss in a 6 week time period.  I tested positive for one band in August 2008 therefore, deemed negative by CDC.  In November 2008 IGenex tests revealed  positive for lyme and babesia.  One year into treatment, I began getting calls from state health department about my CDC POSITIVE LYME TEST.  Why?  Because this bacteria does not float in your blood it migrates into your tissues and organs and brain.  By the time this happens you are very sick!  Recent studies shows it hiding from your immune system in your  lymph nodes (Your immune system). 

    The thought is if not discovered early and allowed to disseminate into your body your immune system is so overwhelmed that it cannot mount any kind of antibody response.  The western blot test for antibodies NOT THE BACTERIA.  How many more people will find themselves in this middle of the torrentous ocean with no life saver in sight before the government admits what has been going on for a long time now (an Epidemic of tick borne illnesses).  Solving a problem begins when you admit you have one).  I am in Texas whereas the CDC says we have no lyme and no deer ticks.  Coicidentally,  I had three on our property (two in our garage and one on a feral cat we feed).  All three were deer ticks and all three  tested positive for the borrelia bacteria.  The test was done by a major university so there is not mistaking that its a false positive as it was done more than one time to confirm.  This study will be documented by the professor heading the study.  White out might not be able to cover the truth.

  • Steph

    I had a bite on my neck and a rash and was not tested for Lyme disease till I suggested the test to my doctor 3 months later when the rash would not go away. U C Davis conducts studies on Lyme and constantly told me I didn’t have it even though my tests where positive IGG only.I had to convince my doctor to prescribe antibiotics. I had horrible depression on Doxy and switched to Amoxycycline which I took for only 2 months. I still dont know if it was lyme disease or a reaction to the drug. I still have tested positive for lyme but my doctor will not prescribe more antibiotics. I have also had a pituitary tumor removed from my head recently which everyone says was not related to lyme disease. I walk in a beautiful deer infested  area off the American River, and I always wear tick spray now,yet the UC davis doctors swear their is no problem with lyme disease.  The center for disease control says I am possitive. It has been two years since my bite and I feel great. I do not know if I ever had lyme or not.Someone posted Tick signs in the area I walk, which were not there six months ago.My own family wont wear tick spray and laugh at me, even though my life was a  mess last year. The test is Whacky, people are ignorant and I am convinced that the UC Davis infectious disesease doctors  researchers care more about money than people. Lets get a better test, more education for the public and doctors and kill the  deer. We should have more rights than deer.

  • DM from Rochester, MA

    I’ve had Lyme disease 3 times in the past 7 years.  The first two times I found the tick on me and made a mental note to watch the spot for bullseye rash, which popped up VERY clearly 7-10 days later.  I was treated immediatly with antibiotics and suffered no ill health effects. Last year I contracted the disease again but the bullseye rash was not as apparent (I thought I had sunburned my foot).  I came down with flu-like symptoms which cleared up after a few days but came back again with a vengance a month later and were accompanied by a 104 degree fever and severe joint pain in my foot, leg and hip.  I was diagnosed with Lyme and again did the antibiotic regimen.  It took a month or so before I was felt well.  I shudder to think of what would have happened if I hadn’t gone to the doctor quickly each time I contracted the disease.  I’ve heard horror stories from friends and relatives who have gone for years before they were diagnosed.  Some were cured after intensive antibiotic treatment, some were not.  My town, Rochester, MA is a Lyme hotbed.  I looked at the MA Lyme map on WBUR web site and can say that at least for my town the numbers are GROSSLY under reported.

  • Lymelight

    A “Huge” problem in a state that has arguably the finest research medicine in the world yet NO dedicated Lyme and tick co-infection research & treatment center available for sufferers?

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