lyme disease


Doc: Lyme Underreporting ‘No Surprise’ But Big Problem

It was big news this week when the CDC announced that cases of Lyme disease were vastly underreported and that, in fact, about 300,000 Americans are diagnosed with the disease each year — 10 times its previous estimate. Lyme disease now has this distinction according to the public health authorities: It’s the most commonly reported tick-borne illness in the United States.

In the latest NEJM Journal Watch’s HIV and ID Observations blog post, Dr. Paul Sax, clinical director of the HIV Program and Division of Infectious Diseases at Brigham and Women’s Hospital and professor of medicine at Harvard Medical School, writes that he’s not at all surprised by the Lyme disease underreporting and offers a few theories on what’s behind it:

Go ahead, check my math — that’s a whopping 10:1 ratio of actual to reported patients with Lyme, highlighting that this reporting is something we clinicians just don’t do very well.

And it’s no surprise to me at all.

Here’s why:

–Clinicians are busy doing other stuff, most importantly taking care of their patients.
Lyme is one of many reportable diseases — take a look at this list!
–It’s annoying. If you asked 100 doctors and nurses what they like least about practicing medicine, 74.39% would say “the paperwork.”
–The forms can’t be completed quickly, as they request detailed information about dates of exposure and onset of illness, presence of diverse associated symptoms, and evaluations for ancillary diseases. Plus, they’re paper forms — a particular problem in an increasingly web-based and electronic medical record world. As for the specific dates of possible exposure and onset of symptoms? “I just lie,” one PCP told me.
–“Soft calls” won’t get reported at all. Think about the febrile, achy patient in the summer who’s just spent a weekend hiking in the woods, saying ticks were everywhere, then gets treated (appropriately) for suspected Lyme. That may be the billing code the clinician uses, but often as not, no Lyme test is sent.
–No one’s paying for these reports. Forgive the mercenary tone to the comment, but as these folks will tell you, humans are very predictable creatures — give them some incentive to do something, and they’ll often do it, even if the task is unpleasant.

Sax suggests that those seeking a fix for the underreporting problem might benefit from looking at the history of HIV, Continue reading

New CDC Estimate: 300K Americans Diagnosed With Lyme Disease Each Year


If you follow Lyme disease at all, you know that there’s no question that the official prevalence figures fail to capture the true extent of the toll those nasty little disease-spreading deer ticks take. The only question is just how far the official figures fall short of reality.

WBUR’s Lyme Disease series last summer cited these official figures for Massachusetts: 2-4,000 confirmed cases each year. But everyone knows those numbers are laughably low. Dr. Catherine Brown of the Massachusetts Department of Public Health said a more realistic figure might be the 12-14,000 positive lab tests for Lyme disease reported statewide each year. But that’s clearly still low. A leading tick expert estimated that in much of Massachusetts, about 1 percent of the population contracts Lyme each year.

Now, at a major conference on Lyme disease and other tick-borne illnesses under way in Boston, federal health authorities have just released their own more realistic estimate, and it’s about ten-fold their old one. From the CDC press release:

Preliminary estimates released by the Centers for Disease Control and Prevention indicate that the number of Americans diagnosed with Lyme disease each year is around 300,000. The preliminary estimates were presented Sunday night in Boston at the 2013 International Conference on Lyme Borreliosis and Other Tick-Borne Diseases.

This early estimate is based on findings from three ongoing CDC studies that use different methods, but all aim to define the approximate number of people diagnosed with Lyme disease each year. The first project analyzes medical claims information for approximately 22 million insured people annually for six years, the second project is based on a survey of clinical laboratories and the third project analyzes self-reported Lyme disease cases from a survey of the general public.

Each year, more than 30,000 cases of Lyme disease are reported to CDC, making it the most commonly reported tick-borne illness in the United States. The new estimate suggests that the total number of people diagnosed with Lyme disease is roughly 10 times higher than the yearly reported number. This new estimate supports studies published in the 1990s indicating that the true number of cases is between 3- and 12-fold higher than the number of reported cases. Continue reading

Tick-Killing Tip: Dry Then Wash, Brief Dryer Spin Could Do It

Tip #1 on (Courtesy of TickEncounter Resource Center)

Tip #1 on (Courtesy of TickEncounter Resource Center. Note the tiny black tick in center foreground.)

It sounds so odd, like being told, “Put on your shoes, and then your socks.” But indeed, one useful tip for killing the ticks that carry Lyme disease is to put the clothes you were wearing outside into the dryer for a few minutes before you wash them — the better to kill the ticks, you see.

How long exactly to dry them? Well, today’s Boston Globe features a delightful story about a Braintree teenager, Jacqueline Flynn, who set out to find out, and whose preliminary research suggests that ticks can be killed in just five minutes of drying at low heat.

That discovery by the 16-year-old Braintree High School student has won top local science prizes and has caught the attention of scientists at the Centers for Disease Control and Prevention, the nation’s massive health watchdog.

As part of its tick prevention recommendations, CDC literature urges tumbling tick-infected clothing in a dryer on high heat for at least an hour as one way to eliminate the bloodsucking arachnids. But the agency had not studied the method further…

“This could have significant implications for Lyme disease prevention,’’ said Christina Nelson, an epidemiologist at the CDC’s office in Fort Collins, Colo., who became intrigued by the teenager’s finding. “If it is true that five minutes in a dryer kills ticks vs. a full hour, that is a lot easier for people, and that could also spark further investigations.”

With tick season, and thus Lyme disease season, soon upon us, however, we wouldn’t want to draw half-cooked conclusions and under-dessicate any of the little buggers. So I checked in with tick expert Tom Mather of the University of Rhode Island and its TickEncounter Resource Center.

He confirmed that a fairly quick spin in the dryer can kill nymphal deer ticks that carry Lyme disease, as the TickEncounter Resource Center has been recommending:

Most ticks are VERY sensitive to dryness. The very first action to take after working in the yard is to strip clothing off and throw it in the dryer. Deer ticks are most susceptible, while American dog ticks, Lone Star ticks and other Amblyomma species are more robust. To be sure that each species achieves fatal crispiness, leave clothes in the dryer on high for 15 minutes. Continue reading

Lyme Disease Study: New Infections Explain Relapses

The classic “bullseye rash” of Lyme Disease


Parts of Lyme disease are clear: It’s caused by bacteria, which are carried by ticks, and it’s a growing problem across much of the United States.

And parts of Lyme disease are so contentious that people talk about “the Lyme Wars.”

Chronic effects from Lyme disease — including terrible fatigue, trouble thinking and pain — constitute the central Lyme Wars battlefield, and the central practical issue is whether chronic sufferers should take long-term antibiotics. Mainstream medical experts warn that the longterm antibiotics are dangerous and ineffective; some patients and doctors disagree.

Now comes the latest salvo, in the New England Journal of Medicine: A gene study that found that in Lyme patients with relapses, the bacteria were different the second time around, and thus the recurrence must be due to a new infection by new bacteria rather than a relapse from bacteria that lingered in the body despite antibiotic treatment. Continue reading

Boston Globe Editorial: Lyme Disease Vaccine Needs Second Look

Canine vaccines protect against Borrelia burgdorferi, the bacterium that causes Lyme disease. (Jesse Costa/WBUR)

Among all the extensive coverage in WBUR’s recent Lyme disease series, it was reporter Curt Nickisch’s story, Why your dog can get vaccinated against Lyme disease and you can’t, that really took off online and went viral. It lays out the frustrating history of the human vaccine for Lyme disease, introduced in 1998 and pulled from the market in 2002.

Sunday’s Boston Globe cites Curt’s story in a masthead editorial: “Lyme disease vaccine deserves a second look.” It reads in part:

Never-proven claims that the Lyme vaccine caused arthritis and other symptoms scared off some patients and raised the possibility of big legal judgments. For the manufacturer, the limited sales didn’t justify the risks.

But with a decade of hindsight, people in the areas most affected by Lyme disease deserve a second look. Not everyone will be accepting; opposition to the measles, mumps, and rubella vaccine has become entrenched among some parents, even as the research that initially fueled it has been discredited. Yet it’s precisely because of that controversy that medical authorities, the media, and the general public may weigh claims by vaccine critics more carefully.

As Lyme disease cases continue to emerge, public health authorities in New England need to lead the drive to bring existing vaccines back — or promote research on new and better ones.

Debate about the Lyme vaccine remains; some patient advocates challenge the claims that the vaccine was safe. But perhaps this Globe editorial and Curt’s story will add new impetus to the discussion about vaccines in the new state commission on Lyme disease. Curt blogs about his story here.

Lyme Disease’s Evil Henchmen: Other Tick-Borne Infections Grow

The final segment in WBUR’s week-long Lyme disease series is not about Lyme disease at all. It’s about the rising threat from what I think of as Lyme’s evil henchmen, rare but dangerous infections that are also carried by ticks and have been known, in the worst cases, to prove fatal.

See the full story, by WBUR’s Steve Brown, here: Emerging tickborne diseases causing concern in Mass. We also posted a recent report on state public health officials’ concern that though these other tick-borne diseases are relatively rare, they’re growing very quickly, roughly doubling in the last year.

Writer Jennifer Crystal

Am I fear-mongering? Oh, yes, and I’m not done yet; I have some excellent help. Read this horrifying tale that appeared in the Boston Globe in May. Written skillfully by Jennifer Crystal, an Emerson College student, it describes a long-misdiagnosed case of what turned out to be not just Lyme disease but co-infections of babesia, ehrlichia and bartonella. She ended up bedridden for two years.

Steve Brown quotes Cape Cod entomologist Larry Dapsis: “These ticks can carry more than one pathogen. In fact, with these nymph stage ticks that are basically the size of a poppy seed, in our research, we find that upwards of 15 percent of these ticks can be carrying Lyme plus one of these other two pathogens.”

Dapsis says anaplasmosis is especially prevalent in the Berkshires; babesiosis is concentrated mainly on and around Cape Cod and the islands (see the map below.)

Jennifer blogs here about co-infection with other tick-borne illnesses on

Before tick-borne illness became my way of life, I had never heard of babesia, ehrlichia or bartonella, either. These parasitic infections are difficult to pronounce, let alone spell or comprehend. It’s easy to brush off what we don’t understand as not important, but sweeping these illnesses under the carpet is an egregious error that we cannot afford to make.

A single tick bite can deliver a number of co-infections, the most common being the aforementioned three. Unfortunately, the presence of these coinfections can complicate treatment immensely. Babesia, for instance, which is related to malaria, requires completely different drugs than Lyme. When a Lyme patient doesn’t respond to treatment, it may be due to undiagnosed and untreated co-infections. Continue reading

Many Doctors Reluctant To Speak Publicly About Lyme Disease

“Wow,” I commented to WBUR Morning Edition producer Kathleen McNerney after I overheard her frustrated acceptance of one more refusal from one more specialist she’d asked to speak on the air about Lyme disease. “I can’t think of another medical field where it’s this hard to find a doctor who’ll speak on the record.”

In the course of the reporting for WBUR’s week-long series on Lyme disease, it has been extremely difficult to find local mainstream doctors willing to speak publicly about it. Lyme disease is surely one of the more controversial issues in American medicine, but is the atmosphere around it really that daunting and toxic? Here, Kathleen shares her experience and the perspectives of specialists.

By Kathleen McNerney
Guest Contributor

It’s passionate. It’s personal.

Thousands of people in Massachusetts are diagnosed with Lyme each year.

According to Dr. Gary Wormser, an infectious disease doctor at Westchester Medical Center and professor at New York Medical College, a year or more after those patients receive the standard treatment for Lyme disease, about 10 to 15 percent complain of chronic fatigue, aches and pains, or cognitive impairment. (One study cited by the Centers for Disease Control and Prevention puts that figure at 10 to 20 percent.)

Those patients who suffer ongoing symptoms are central to a debate in the medical community.

“It’s important to realize that the central controversy surrounding Lyme disease is that individuals have quite different perspectives on what Lyme disease is and also what chronic Lyme disease is,” said Wormser.

Another doctor said it was a “lose-lose situation” to speak publicly and possibly jeopardize his research, because there is so much animosity out there.

The majority of doctors and researchers say Lyme disease is caused by a tick-borne infection called borrelia burgdorferi that is easily treated with a round of antibiotics. But a small group of doctors raise questions about the tests used to diagnose Lyme and say that the infection is persistent, wreaking havoc on people’s bodies.

The debate is intense. So intense, in fact, that very few doctors in the mainstream want to speak publicly about it.

For WBUR’s series Living with Lyme, we reached out to dozens of specialists in Massachusetts to try to get the mainstream perspective (getting the alternative perspective was fairly easy).

Several didn’t return repeated phone calls. One administrative assistant said, “If you don’t hear back, it means that he’s not interested.” Two doctors would only speak off the record. One said he didn’t want to have a formal interview because “If you say something wrong, people pounce.” For him, it was too volatile an environment to speak publicly: “My job is not to debate, but explain what I think” based on scientific evidence. Continue reading

Questions For Our Lyme Disease Panel?

Yikes. Tomorrow I will venture deep into what some call the Lymelands, moderating a panel on the week-long WBUR series, Living with Lyme. It’s at Fenway Health at 1340 Boylston Street in Boston; it’s free and there are still a few seats left — please come if you can! And if you can’t, the event will be live-streamed and then archived on

Whether you can make it or not, I’d deeply welcome questions that you’d like to pose to our panel. It includes a prevention expert, a state legislator who’s spearheading state efforts to fight Lyme disease, and a clinical psychologist with both personal and professional knowledge of the patient’s perspective.

To sign up for the event (it’s free but you need to register) please click here. To send in a question, just click on the “Get in touch” rectangle at the very bottom of CommonHealth, or email me at Hope to see you — or your question — there!

Found A Well-Fed Deer Tick On Yourself? Quickie Antibiotics Aim To Prevent Lyme

Please forgive this overdose of tick talk, but WBUR is running a series on the dramatically growing problem of Lyme disease this week, and it strikes me as a particular public service to highlight this useful bit of information from Sacha Pfeiffer of All Things Considered:

If you find an engorged deer tick on you, and it’s likely that it’s been there more than 24 hours — and thus long enough to transmit Lyme disease — it’s now accepted medical practice in areas where Lyme disease is endemic (like all of Massachusetts) to give you a single preventive dose of antibiotics aimed at stopping the infection before it takes hold.

Sacha’s full interview with Dr. Jonathan Edlow, an emergency physician at Beth Israel Deaconess Medical Center, about treatment for possible exposure to Lyme, is here: What to do if you think you’ve been exposed to Lyme disease. Dr. Edlow is the author of “Bull’s-Eye: Unraveling the Medical Mystery of Lyme Disease.”

Key excerpt from the interview:

So if there’s a concern that a patient may have been exposed to Lyme disease, but it’s too early for that patient to have symptoms, what is the treatment?

The treatment for a tick bite — assuming that the tick has been on you for at least 24 hours, it hasn’t been on you for more than 72 hours, and it’s a deer tick — would be 200 milligrams of doxycycline for an older child or an adult. Treatment at that stage is really to prevent Lyme disease.

But if a person is showing Lyme symptoms, such as a rash or a fever and muscle aches, is that patient beyond the window of time in which a small dose of antibiotics can possibly help?

That’s correct. The 200-milligram dose of doxycycline is to prevent Lyme disease. What you’re describing — having symptoms of a rash or a fever — that’s established Lyme disease and requires a longer course of antibiotics.

Why Your Dog Can Get A Lyme Disease Vaccine And You Can’t

Canine vaccines protect against Borrelia burgdorferi, the bacterium that causes Lyme disease. (Jesse Costa/WBUR)

The other day, after a public lecture on Lyme disease, a mother in the audience quietly told me that she was planning to ask her veterinarian to immunize her children with the dog vaccine against Lyme. Good luck, I thought. But I know how you feel.

It’s a question many people naturally ask, particularly dog owners: Why is there a canine Lyme disease vaccine but not a human one? WBUR’s Curt Nickisch answers that question beautifully today in his story about the rise and fall of the human vaccine that was briefly available in the late 1990s. It includes an interview with Dr. Allen Steere, a giant in the field of Lyme disease research who is now at Massachusetts General Hospital. It portrays a classic story of what seems to be a greater public good falling victim to our litigious, commercial, sometimes anti-science society. And it raises the (apparently dim) prospect that the vaccine will be resurrected, or a better one developed.

Warning: Even though after reading this piece you’ll understand the back-story of why no human vaccine is currently available, you may still be asking, “But why, why, why?”