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Lyme Disease: A Patient’s Story, A Doctor’s Response

Barbara MacLeod at home in Kittery, Maine (Jesse Costa, WBUR)


If there were no patients like Barbara MacLeod, no one would care about Lyme disease, and WBUR would not currently be running a week-long series about it. It would just be a summer fever and rash. The trouble is that among the many people infected with Lyme disease, some — like former NECN anchor Barbara MacLeod — remain long undiagnosed and they can get very sick, for a very long time.

No one denies that Lyme disease can have long-term effects. The controversy arises around whether the Lyme infection can persist after antibiotic treatment, and whether longer-term antibiotics help. This is the nub of what some call the Lyme Wars, pitting some patients and a contingent of doctors against mainstream medical findings and guidelines. And today, we got a taste of the wars on WBUR’s air, with Barbara MacLeod’s harrowing story on Morning Edition and then, on All Things Considered, the beginnings of a response from Dr. Mark Drapkin, an infectious disease specialist at Newton-Wellesley Hospital and a professor at the Tufts University School of Medicine. On Friday, we’ll hear him explain why he believes Lyme is not a chronic disease, but why people can have lingering effects from the infection.

The Lyme wars tend to get nasty. Barbara MacLeod was brave to tell her story, and Dr. Mark Drapkin is courageous to represent the mainstream infectious disease specialist’s point of view. I can’t wait to hear his fuller interview on Friday.

Voices: How Lyme Disease Infects Town Life

[Note: Live in Lincoln? Have a case of Lyme disease to report? Go to the interactive map here]

It’s a cardinal rule of writing that you’re supposed to “show, not tell,” and the same is true in radio. But as a self-indulgent blogger, I’d like to just hammer for a moment on the central point I tried to convey in today’s lead-off piece in WBUR’s Lyme disease series.

And that is, that though Lyme disease has been around for quite a while in coastal areas of Massachusetts, it has spread in the last few years across the entire state, most notably into the Metro West/495/128 region. And as it spreads, Lyme — and the fear of Lyme — permeates the fabric of our communities, changing our lives. (And for the very unlucky, ruining their lives, as you’ll hear in tomorrow’s piece.)

After a recent “tick talk” at the 19th-century Bemis Hall in Lincoln, a few audience members lingered, and I asked them how Lyme disease has affected life in Lincoln — a Metro West town whose Lyme disease burden is clearly heavy but by no means exceptional. A few voices:

Sarah Bishop: “I’m a preschool teacher in town and I’m finding that I’m not taking the children into the woods the way I used to. I’m afraid to even play on our playground. and kids are spending far too much time in front of screens and yet I am afraid to take them back to nature.

“The saddest thing was the other day, I heard one of my kids say — I had called them to come back and they said, ‘Oh, yeah, that’s right, we can’t go into the woods, there are ticks.’ And I thought, ‘Ohhh, but I want you to go into the woods and I want you to get lost there and explore there, and create things there,’ and yet I’m scared to death to take them there. And I actually did pick a tick off one of my preschoolers last week, it was in the corner of his eye, just in the fold of the skin. It’s awful.

Janice Phillips: “I live on the south side of Lincoln, and everyone on my road has had it at least once. Continue reading

Do-It-Yourself Lyme Disease Education: The Tick Talk Rap

 

Sometimes you can’t wait for budget-strapped public health officials. Sometimes you just have to do it yourself.

The Tick Talk Rap” in the audio file above was composed and recorded by Sandy Lafleur, assistant to the nurse at Milford High School in Milford, New Hampshire. It begins:

Tick talk. Tick talk. Listen to my Tick talk.
What up, brother and sister? Say, did you hear?
The ticks are especially nasty this year.
Lyme disease is something that’s transmitted by a tick;
If you get Lyme disease you can get really sick.
(as in the original meaning of the word: Not good.)

Ticks are very tiny and they hide in brush and grass
and they latch upon you as you pass,
attach to your pants, your sock or your shoe,
they crawl up till they find some skin and then they bite you.
You think you’d feel the bite but you’d be so wrong
so listen up, you all, to the rest of my song
Tick talk…Tick talk…Listen to my tick talk…

Sandy writes this pithy release:

Frustrated by New Hampshire local, regional, and state health officials’ inaction and inability to educate people, particularly young people, about Lyme disease, Sandy Lafleur, Assistant to the Nurse at Milford High School (Milford, NH), enlisted the help of two MHS students to produce “Tick Talk Rap”. Recorded on June 1, 2012, in the Nurse’s Office at MHS, voices are those of Darrick Jones, Dillon Harwood, and Sandy Lafleur. Lyrics by Sandy Lafleur.

And she added in an email:

The whole purpose of writing and recording this was to raise awareness and educate young people about ticks and Lyme disease in our area. (Our local, and State Public Health officials have been disgracefully slow and inept at reaching out to our youth and in Tick/Lyme education in general. And yes, you may quote me as saying this.) Continue reading

Lincoln Residents Who’ve Had Lyme Disease: Take 2 Minutes, Get On The Map

 

Question: What is that new little map in our upper right-hand corner that says “Tracking Lyme Disease In Lincoln?” Answer: As part of an upcoming WBUR series, we’re inviting residents of Lincoln who’ve had Lyme disease to self-report it by clicking on that map and then on “Post a report.” [Update: After the series ended, we took the map off our homepage but it’s still available here.]

Why? Many aspects of Lyme disease are controversial but this one isn’t: The official count of cases greatly underestimates how many there actually are. This is an experiment using Lincoln as a sample Massachusetts town.

The map, developed by public health informatics wizards at Boston Children’s Hospital, will not yield official data. But it can provide a better sense of how widespread Lyme disease actually is in Lincoln, and where the biggest clusters lie.

If you’re a Lincoln resident who has had Lyme disease, please take two minutes and weigh in. This map won’t be complete without your report. And please spread the link to your neighbors and friends.

For specific questions, please email careyg@comcast.net, and my apologies in advance for any confusion — did I mention that this is an experiment? But it’s a rare chance to try “crowdsourcing” the answer to a question of high importance to the town (and far beyond its borders.) Here’s a basic FAQ and guide that will evolve as input rolls in:

What do I put in the headline? 

We suggest age, gender and “diagnosed with” or “probable.” Please do a separate report for each person in your household being reported, and for each time you were diagnosed.

Should I put my home address on “street or road”?

Well, it’s up to you; each report drops a virtual pin into its location on the map. We put “street or road” rather than “address” so that we could preserve some privacy for people while still giving a sense of where clusters lie. If you believe your Lyme disease came from somewhere outside of Lincoln, please still put in your street but write the location where you were infected in the “description” box.

Will my email be public? Continue reading

Rare But Dangerous Tick-Borne Diseases Doubled In Mass. Last Year

Surely you know that Lyme Disease is endemic all across Massachusetts. Surely you didn’t need any further incentive to guard against tick bites — to wear insect repellent, do tick checks after being outdoors, and more. But just in case, I’m passing along some worrisome statistics I just learned from Dr. Catherine Brown, the state public health veterinarian, about the rise of two other tick-borne diseases. They’re both far rarer than Lyme Disease but don’t relax; they’re also both potentially fatal.

They’re called babesiosis and anaplasmosis, and confirmed cases of both effectively doubled from the 2010 numbers to 2011. They still remain extremely uncommon. Even after the doubling, there were 191 confirmed Massachusetts cases of babesiosis in 2011, and 140 confirmed cases of anaplasmosis. But when numbers rise so dramatically, Dr. Brown said, “It makes us notice.”

Some pointers: Unlike Lyme Disease, which crops up across the whole state, these two rarer diseases are more geographically confined, Dr. Brown said. Anaplasmosis tends to appear on the Cape and islands, in the Metro West area and in southern Berkshire County. Babesiosis, similarly, tends to strike on the Cape and islands and in Metro West. Cases spike in summertime, and tend to occur in older people.

babesiosis map

As with Lyme Disease, symptoms tend to include fever and fatigue, but Lyme symptoms may be mild, whereas with the two rarer diseases, Dr. Brown said, “you actually get much sicker and know something is seriously wrong.” She has no exact numbers on deaths, but there have been “a few reports of fatalities,” she said.

For more information, check the Massachusetts Department of Public Health, including this fact sheet on babesioisis and this overview of tick-borne diseases. Continue reading

Lyme Disease Tip — Repellent On Shoes — And A Bold Wager Among Entomologists

socks and shoes

Credit: Loosends/Flickr CC


I came away with some real news-you-can-use from yesterday’s Radio Boston segment on predictions that this spring could pose unusually high risks of Lyme Disease: When venturing into possible tick territory, be sure to spray insect repellent on your shoes and ankles as well as elsewhere, because the young ticks that could infect us with the Lyme bacteria tend to be low down on the ground.

Toward the end of the segment, I was lamenting to Cary Institute of Ecosystem Studies disease ecologist Richard Ostfeld that I felt as if the joy of the outdoors had been basically ruined for me by the threat of Lyme Disease, and he replied:

“I think that we have to find a happy medium, and not use our legitimate fear of tick bites as a reason to stay inside. If we do use those CDC recommendations, like using repellents — and I remind people to use those repellents, spray those things on your shoes and socks as well as your pants or your bare legs if you’re wearing shorts. Ticks that cause Lyme Disease, the nymphal ticks, are on the ground or barely above the ground. They just don’t climb very high. So get your shoes and socks, don’t leave them unsprayed. And those tick checks are very very important. And also being aware of Lyme Disease symptoms, those flu-like symptoms outside the flu season in the summer. If we use a lot of those protective devices we can seriously reduce our risk of exposure and still enjoy the outdoors.

Now, no bit of news about Lyme Disease ever seems to pass without discussion or debate, and in Radio Boston’s Webpage comments, this segment’s prediction for this spring brought challenges from two of our own distinguished local insect experts: Richard Pollack and Sam Telford. Writes Prof. Telford:

The ecological factors are only 1 of 3 influences on the number of Lyme disease cases. The other two are human behavior and spring/summer weather events (e.g., drought, lots of rain, one bad storm). Even if the ecological data suggest that this might be a bad year (lots of ticks due to lots of rodents last year, possibly earlier host-seeking activity of nymphs this spring), if we have a drought in May (continue our current precipitation pattern) then nymphal ticks will die sooner than they usually do. Any greater number of cases due to early activity (perhaps as soon as mid April) here will balance the fewer cases reported in July due to tick mortality in June (given a drought). Or, gas prices will continue to suck and folks won’t drive down as much to the Cape or the Islands, or to Ipswich, and stay closer to home and thus there might be less exposure. Continue reading

Bad Lyme Disease Spring Predicted For Northeast, Begin Vigilance Now

acorns

toomas-marit.hinnosaar.net

This just in from the Cary Institute of Ecosystem Studies: We in the Northeast should expect an unusually large surge of Lyme disease this spring.

It’s not the extraordinarily mild winter that’s to blame, it’s the fluctuation of mouse populations and acorn harvests. (More on that later.) But the mild winter may mean that the danger period, when tiny young “nymph” ticks that carry Lyme are out for our blood, could begin earlier than usual. The bottom line from Dr. Richard S. Ostfeld, a Cary Institute disease ecologist: Watch out. Starting now.

Normally, Lyme disease risk ramps up in May. But “This past winter,” he said “was record-breaking mild, and when you get records, when you have extremes in weather events, to some degree all bets are off. We don’t really know whether the nymphs are going to start their activity earlier this year than in normal years. So it’s remotely possible they could be out as early as April. They’re cold-blooded creatures, so things get speeded up in terms of their metabolism and development when things are warmer. So it could be a bit earlier than usual. I wouldn’t wait to be vigilant. The time is now.” (What does such vigilance look like? Here are prevention tips from the CDC.)

I asked Dr. Ostfeld if he could offer some order of magnitude of the expected surge in Lyme disease. Very, very roughly, he said, we could see perhaps 20 percent more cases than usual.

Acorn production in 2010 set a record for the 20-plus years it has been monitored, he said, “and mouse abundance in the summer of 2011 was oh, perhaps 10 or 20 percent higher than we’ve ever recorded. So I would expect the Lyme disease risk should be at least that much higher than we’ve had in the past.” He emphasized: “This is a prediction based on past trends, and in ecology, as in economics — what do they say about stock portfolios? — past performance does not predict future returns. But that’s my best estimate as to what might happen.”

Now for a bit of the ecology behind the predictions. From the Cary Institute’s press release: Continue reading

Ticks That Carry Lyme Disease Spreading Into Canada

The classic "bullseye rash" of Lyme Disease

Now that my young son has had Lyme Disease twice, the outdoors no longer holds the same allure for me. When I see children gamboling in the woods, my mind’s eye sees tiny infected ticks creeping quietly onto their ankles. Bushes and trees have become sinister, and not even sweeping lawns look innocent anymore.

I’d been wondering if perhaps we could take an outdoor vacation so far north that we’d be beyond the Lyme bacterium’s reach, but this report just out in the Canadian newspaper Times Colonist disillusions me: The deer ticks that can carry Lyme disease have been spreading rapidly in Canada, apparently due to global warming.

From the Times Colonist:

A new study has documented the rapid growth in Canada of ticks that can cause Lyme disease, and global warming is thought to be a factor.

Ticks capable of carrying Lyme disease went from being almost non-existent in populated areas in Canada in 1990 to being currently in 18 per cent of such spots east of Saskatchewan, and this is expected to reach 80 per cent by 2020, according to the paper published in the British Ecological Society’s Journal of Applied Ecology.

Lyme Disease remains exceedingly rare in Canada compared to the United States, but my paranoia remains broad enough that I’m leaning toward Western Canada if we take a trip.

The study did show that warmer areas are seeing more rapid growth in ticks. Continue reading

The Ultimate Lyme Disease Map — So Far

This is the ultimate Lyme Disease map for the Eastern United States — so far, that is. Those scary red blots keep swelling, and swelling, and swelling…

But at least this latest charting of the risk to humans means we’re keeping better track of Lyme Disease, a tick-borne illness whose symptoms can range from a rash and fever to long-term neurological effects.

(Better track in most places, anyway. Please ignore the apparent Lyme-free zone on Cape Cod above. It’s just an artifact of limits on the data.)

The map and its analysis are just out in the American Journal of Tropical Medicine and Hygiene. I spoke today with Maria Diuk-Wasser, an assistant professor of epidemiology at the Yale School of Public Health and lead author on the paper, “Human Risk of Infection with Borrelia burgdorferi, the Lyme Disease Agent, in Eastern United States.” I pressed her to apply a superlative to the study, and she offered that this is “the largest field-based, standardized effort to describe the risk for Lyme Disease.”

In concrete terms, that means that about 100 people — she eventually lost count — went “tick-dragging” all over for the ticks that carry Lyme Disease. They were trained and sent out onto a given territory with a “drag cloth,” a one-meter-square swath of corduroy. They would walk along and drag the cloth behind them, and every 20 meters they would lift it up, pick up all the ticks attached to it with tweezers, preserve them in alcohol and ultimately send them in to Dr. Diuk-Wasser’s team for analysis.

It will be news to few Massachusetts residents that the state is a hotbed of Lyme Disease, and we’ve written about it before. But the survey further crystallizes the disease’s geography, and Dr. Diuk-Wasser says that one of its findings may also help inform clinical practice: Almost everywhere that the draggers found young ticks, the usual culprits in spreading Lyme Disease, about one in five of the ticks actually carried the Lyme Disease bacterium. Continue reading

Lyme Disease: Comments, Clarification and Future Coverage

Massachusetts is not just a hotbed of Lyme Disease; it’s a hotbed of debate and legislative action on Lyme Disease. Yesterday, this story about Lyme Disease by WBUR’s Monica Brady-Myerov ran on the air and on WBUR.org. Today, WBUR adds this clarification:

Editor’s note: Listeners and readers of this story might conclude that the medical establishment is evenly split between those who support a diagnosis of “chronic Lyme Disease” and those who do not. In fact, there is a strong consensus against that diagnosis as an explanation for the long-lasting symptoms some patients experience, and against long-term antibiotics as treatment. The issue remains hotly debated publicly, and WBUR’s health blog, CommonHealth, plans to follow it in the coming months.

The story had prompted a stream of comments, including several from people who suffered from long-lasting illness after Lyme Disease. On the other side were commenters like “ED Doc,” who wrote that the story “perpetuates a myth that has been scientifically disproven, that there is a disease entity of ‘Chronic Lyme Disease.’ While I am sure the patients quoted in the story truly suffer these difficult symptoms, there is simply no credible scientific evidence that the symptoms suffered by the patients Ms. Brady-Myerov quotes are due to a chronic infection with Borrelia burgdorferi– the microorganism responsible for Lyme disease.”

Indeed, the CDC says here:

Approximately 10 to 20% of patients treated for Lyme disease with a recommended 2-4 week course of antibiotics will have lingering symptoms of fatigue, pain, or joint and muscle aches. In some cases, these can last for more than 6 months. Although often called “chronic Lyme disease,” this condition is properly known as “Post-treatment Lyme disease Syndrome” (PTLDS).

The exact cause of PTLDS is not yet known. Most medical experts believe that lingering symptoms are due to residual damage to the tissues and the immune system that occurred during the infection. Similar complications and auto-immune responses are known to occur following other infectious diseases.

In contrast, a few health care providers tell patients that these symptoms reflect persistent infection with Borrelia burgdorferi. However, there is no credible scientific evidence that PTLDS is caused by persistent infection. More importantly, studies have shown that patients treated with prolonged courses of antibiotics do not do better than patients treated with placebo. Continue reading