activism, diagnosis, thoughts

Slipping between the cracks

In the last week, I have met or heard about three different cases of younger individuals who either died or were very ill with a combination of diseases that cause neurological and physical symptoms. I invariably have the same reaction in these cases – I think of Lyme disease and wonder whether they were properly evaluated for it. I often think of the saying ‘when you have a hammer everything looks like a nail’ and wonder if I should say or do anything. But I also know that I was headed down the path toward an MS or ALS or similar diagnosis myself. I only discovered that I had Lyme disease because I was lucky. A massage therapist, who I called to ask for help with my pain, suggested the diagnosis.

One of the three told me she had a false positive test for Lyme. This more than anything set off alarm bells in my head. How could I fail to wonder whether the ‘false positive’ was a true positive, given the lack of specificity in tests. Many doctors never tell patients basic facts about diagnosing Lyme disease.

In the end, I can’t be sure that any of these individuals have Lyme disease, and two of the three have passed away, so even bringing it up would only be a cruelty. But it breaks my heart to think of folks who are that ill not even being properly evaluated for Lyme disease, because I know that there is a way back from Lyme disease.

The passage of PA State law Act 83 in 2014 (the Lyme and Related Tick-Borne Disease Surveillance, Education, Prevention and Treatment Act) mandates education of lyme patients (I don’t think I’ve written about that success yet! I will have to post separately about that). But how can we educate those who fall through the cracks before diagnosis?

For now, at a minimum, I will speak up, even if I fear seeming like a hammer without a nail. But maybe it’s time to do more — find groups of outdoors focused individuals and tell them Lyme disease exists, and that it is controversial, for example. Feel free to share other ideas for how best to reach out to maybe-lymies :).

1 thought on “Slipping between the cracks”

  1. I just stumbled across your blog today. I can totally identify with everything you have written here. I waited 18 years for my diagnosis of Chronic Lyme which I received in March of this year. I began treatments shortly after. It is good to read of others experiences and to realize I am not alone.

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