Sunday, March 17, 2013

Lyme in Montana: Great Falls Tribune article about a mom with lyme

A great article in the Great Falls Tribune mirrors several aspects of my experience so far (3 years sick, traveling to Seattle to get diagnosed, among other things).  This is a portion of my commentary after reading this article (the video at the link is great too).

Great Falls Tribune article:Lyme disease divides experts, Great Falls family's journey...

One of my favorite comments (from the video) was the woman who's friend was urging her to get tested, I think, and explained that lyme resides deep in tissue, especially the eyes and knees.  She said that resonated with her----one of my steadiest symptoms through all of this was the pain behind my eyes.  It defies explanation how constant the feeling's gotten better during treatment, but my eye doctor found tissue damage at the back of my eye (Bell's palsy side).  My knees are worse, but either way, the statement resonates with me, too.

Biologists and agencies can't reliably say for sure where we do or don't have large forest carnivores, yet we trust medical doctors to reliably tell us where we do and don't have an organism too small to see (there's much more to this train of thought in my Montana Momma post on this article).

When I first read the article, I couldn't help but post a couple of comments.  I wonder what the Tribune disliked about them enough to take them down.  They use a facebook interface for comments on their stories.  I posted as my facebook illness page (Invisibly ~ Ill) but if that were the reason, I wonder why they would allow comments from page.  These are the comments they appear to have taken down:

First comment:

Wow. Very few differences between this and my story. Differences: Hers started one month before mine, I did have a tick, my bullseye rash was on my scalp and my doctor didn't see it, and she got diagnosed after two years instead of three, and I had Bells palsy early on. Otherwise...years of symptoms, sick for three years so far, and trip to Seattle to finally get diagnosed. Doesn't it seem worth considering patterns, such as the clustering of patients in western Montana? And worth answering inconsistencies, like the facts presented by the renowned scientist who discovered the disease (this is a slow growing infection that burrows into tissue--hard to detect and hard to treat)? Why a month of antibiotics would be expected to be sufficient, biologically speaking? Why there are vectors north, south, and east of Montana, but not in Montana? Why, given the characteristics of this infection and the MANY ways it can be missed, it is still argued that badly timed and consistently inaccurate tests are relied upon? I don't want to think about conspiracies, I want to think about treatment, but with lyme, one has to face both and figure out how the two are ultimately related.

2nd comment:

I've found four people in my small town that contracted lyme in Montana. Without looking for them. I can't help but wonder how many I'd find if I really searched. Louisiana discovered that they did have lyme in their state (another state thought to not have it) through a study from ticks on bears. Having worked (sometimes hands on) with large mammals (alive and dead), migratory birds and bats, it's hard to accept that it just can't make it into Montana.

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