Welcome to BostonLyme. My name is Allison and I live with some very debilitating effects of having contracted Lyme Disease and gone for years without a diagnosis. I live in Boston. Lyme Disease is not a rural or suburban disease. It is everywhere. Yet, when I seek out resources such as caregivers and support groups, I must travel outside of the city. Hence, this effort to engage our urban neighbors. We need to protect ourselves, too. So, Boston, let's educate ourselves!
When I became sick and went to the doctors to find out what was wrong, I had no idea of the difficult journey ahead of me. A journey that includes fighting to get testing, fighting to get acknowledged even after a definitively positive test, and a continuing fight to get needed treatment. As my health declines, my experience has been witnessed by friends and loved ones. At first we thought my case must be an abberation. Eventually, it became evident that tens of thousands of people have the same story. We are so shocked by what we've seen that we're determined to educate others.
We are sponsoring a panel discussion and information-sharing reception after the August 9th showing of Under Our Skin at the MFA. Please join us to discuss how to prevent Lyme Disease, get treatment if you've been bitten, recognize the signs if you are mysteriously ill, and how to support legislation to protect doctors and fund research.
In the posts that follow, I will share news about the details of our Lyme awareness event, along with my experiences and what I've learned about Lyme and our health care industry. Please post questions, information you'd like to share and/or your stories in the comments.
It is my hope to not only have a successful event on August 9th, but to create a venue for ongoing information and support for those in Boston suffering from or caring for someone with Lyme. So, please join us.
Monday, July 6, 2009
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Bitten in the City, Too
ReplyDeleteHi Allison….thank you for sharing & advocating and bringing awareness to the problem of lyme and ticks within City boundaries.
It’s a huge issue that most are completely oblivious to. I am sorry to hear your all-to-familiar difficult journey of diagnosis and treating & your increasing debilitation.
As you know, because ticks are stealth, anaesthetizing their hosts, I can’t say when I was Originally bitten. But suffered from increasing, mind-bending fatigue and cognitive/neuro type issues over the past many years.
I am an urban dweller, never been outdoorsy, and I’ve only communed with Nature a handful of times in my adult life and took all the Normal precautions when I did.
I could have been bitten 10 or more years ago on the Cape, when visiting a friend a few times in Hanson (just walking from his house to car/in his house itself?), along Jamaica Pond or by ticks brought in by my roommate’s dog when I lived in JP for a year (never saw one)---
But one thing I DO KNOW, I was bitten by a tick from the shrubbery overhanging a concrete sidewalk in Somerville last year.
*Yup, in Somerville, the most-densely populated city in New England and 17th most densely-populated in the U.S.*
The engorged tick fell off me onto my kitchen countertop in late June/early July. A cascade of additional & marked neurological impairments followed and has persisted.
I feel that many or most are walking around with strains of Bb, bartonella, and other tick-borne diseases in their system(s) but that a healthy immune system keeps the effects somewhat at bay for many, until a convergence of many factors – or successive trials to the immune system (2, 3, 4 bites by infected ticks)—occurs.
Anyway, thank you for drawing attention to the reality of Urban Lyme. I will try to introduce myself to you at the MFA on Sunday if I can and am definitely interested in a city support group—as is my sister---as much as our health allows that for us.
-Sharon