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?

No, but we need it in case we need to verify something. Please do include it! Without an email, the report cannot be posted onto the map.

What should I put in “Description”? 

Please include the rough date of your infection. Otherwise keep it as brief as you’d like. Some suggestions:

If you know, was the tick local or had you traveled recently to other Lyme-heavy territory and might you have gotten infected there?

Was your case “acute” — in other words, recently acquired? With what symptoms? Did you find a tick?

Or was it later-stage Lyme disease? With what symptoms?

Any lab tests? What results?

I clicked “Submit” but don’t see any difference on the map.

Please click the “refresh” button on your browser. It should show up.

 

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  • Cvioletstar7

    Have you thought about introducing guinea fowl for tick control? You may consider spending time researching this option.

  • MF

    I added my case, but it didn’t show up. May have forgotten the address as well. Will try to get my wife to post, as she had the classic “ring”.

  • Runswoods

    I have tried clicking on the map with both IE 9 and Chrome browsers and nothing seems to happen.  I’ve also tried kitting the refresh button.

    Could someone check to see that it is working and/or send more specific instructions.

    Thanks

    • Carey Goldberg

      Hello — So sorry for the trouble! First question: Are you clicking on the map in the upper right-hand corner of commonhealth.wbur.org? That one is clickable; the one at the top of the instructions is not. Please let me know if this helps! Apologies and all my best — Carey (careyg@comcast.net)

  • Samanthasrealty

    I love this idea! However, I would love the station to consider “expanding the map” throughout Massachusetts! Now that would make a powerful pictorial. As someone mentioned, the Boston hospitals are not “Lyme literate” and our daughters positive tests and symptoms were denounced as Lyme at 2 top hospitals. We live in a hot bed of ticks, Lyme and other tick-borne diseases, Townsend.

  • Anniebea50

    I have Lyme and I now live in Oregon, but I lived in North Cambridge for many years…. and I used to go to Lincoln regularly !!  and swim in a pond there….  I think I have been suffering with this since I lived in that area.  but doctors here wont even recognize it !!!!  it doesn’t exist  to them !!   so I just suffer !!!!!!   no treatment.  I just try all kinds of things on my own !!!  

  • Lavana47

    I have lyme in Penna this is a good idea at least someone cares enough to find this info out then take it elsewhere for more help within  your state..hats off to this station!!!!!!!! Bless you!!

  • Reasonable?

    Healthmap was developed a children’s Hosiptal Boston and has multiple relationships including with Google.  WBUR is just connecting residents to the existing service.

  • TM

    Perhaps such a test should be conducted with a Lyme Literate facility.  Non of our MA hospitals are Lyme literate and the state has few LL physicians.

  • TM

    Why is a radio station conducting this?

    • Careyg

      Dear TM — We’re planning a series on Lyme disease, and one segment will focus on Lincoln as a sample Massachusetts town. Everyone acknowledges that the official numbers of cases are far too low, and we were curious to see how many reports would come in from Lincoln if we offered the people the chance to report their own cases. It’s of course not at all scientific, but we thought might offer a broad sense…and Children’s Hospital already had this great global tool that they kindly agreed to adapt for this purpose. So basically, it’s a crowdsourcing experiment in conjunction with a series and a health blog, CommonHealth…