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. And if you do any gardening at all, it’s a serious problem, and I’m a gardener. It’s tough. So we do what we can in terms of preventing. We spray our shoes with permethrin and we tuck our socks over our pants legs and examine ourselves every day. And take prophylactic doxycycline if we find an embedded tick. And you just hope for the best.”

Ruth Adams: “A lot of people in Lincoln have been ill, as well as their pets, and I think it affects everybody. We’re very aware of it in Lincoln. It seems to be a problem for chronic Lyme disease, people are getting it more than once or maybe they never got rid of it. One of my dogs died two years ago of it. So I think it’s a very serious disease. I think it used to be swept under the carpet a lot by medicine, I can honestly say that, and I think now it’s coming out a little bit and we’re more aware. There’s more education. It’s really necessary.

We’re very active. Because so many people in town have had Lyme disease, really have had an active case, or their children, or their grandparents.”

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

    The deer epidemic has caused the Lyme epidemic.  In 1930 there were 300,000 deer in the US. Now there are 30 million.  It is tragic that the deer tick has caused so much severe illness and prevents us from enjoying nature the way we used to.  Monhegan Island in Maine had a Lyme epidemic but then they got rid of the deer and now there are no deer ticks and no Lyme disease.  We need to do this on a massive scale and take our country back. 

  • NikiV

    I was just diagnosed as having babesiosis – one of the 3 infections that the deer tick can cause. Luckily, it was caught very early, the appropriate medications were prescribed: a 7-day course of antibiotics,and Mepron, which is also an anti-malarial suspension — and now I’m babesiosis-free (bye-bye, babesiosis!). I was astonished to learn from a wonderful infectious diseases specialist (Dr.Mark Drapkin, of Newton-Wellesley Hospital) that the deer tick can carry THREE infections: Lyme, Anaplasma, and Babesiosis. I think it would be useful to just let your audience know that there are other tick-related infections (babesiosis is, I believe, the only protozoa-based of the three). He told me that his practice actually had a patient with the “trifecta” — all 3!! Just a thought…the report this morning was terrific, am looking forward to the rest of the series, now that I have had a more personal encounter with a crafty nymph!!

    • Tristram Dammin

        Yes the deer tick does carry those three diseases. I just had an elderly friend from Lincoln who was shipped to the Brigham with a severe, life threatening case of Babesiosis.
        However, with the right precautions, we can all enjoy the woods and open land land in New England. My wife picked over 50 ticks off our kids one summer with daily tick checks and neither child got sick from the three diseases. Assiduous, daily total body tick checks, the use of DEET, land management, and education are key to a summer free of tick borne disease.
                Tristram C Dammin MD

      • Manduhai2

         I was infected with three species of borellia (burgdorferi, afzali, and garinii) plus bartonella and erlichia in the woods of southern new hampshire 10 years ago.  I was covered up but when a bulls eye rash showed up it was on my stomach.  Unless we are going to wear astronaut suits the cover up prescription is not enough. 

      • NikiV

        I was delighted to learn today, from Dr. Drapkin, that he will be included in Friday’s installment of Living with Lyme…Wow, over 50 ticks! Your wife is a tick-removal star!!! I never saw my tick, but we believe that I was bitten over Patriots’ Day weekend, when our car broke down on I-93 in New Hampshire, and I, without a care in the world, was walking in the tall grasses wearing shorts and a tee-shirt, more concerned about the AAA tow truck’s imminent arrival than anything else.
          It wasn’t until I did some research after having a severe headache, fever and chills, that the incident came to mind. Thankfully, my primary care physician did a full panel of blood tests, and when the babesiosis diagnosis came back, sent me off to see Dr. Drapkin. And, very thankfully, it wasn’t a very serious case — although I’m STILL tired!
           But you are right – this is not a reason to cower from Mother Nature.
           NikiV

    • Carey Goldberg

      Dear NikiV — I love the phrase “crafty nymph”!! And am so happy your potentially dangerous tick encounter ended so well! CommonHealth did a post on the rapidly rising rates of babesiosis and anaplasmosis in Massachusetts on May 30 — it’s here – and there may be an on-air piece about them soon, but you’re right that they definitely should be more on the radar screen! Thank you for writing — Carey