I know our collective political attention is focused on the presidential election at the moment, but the day to day acts of government and citizenship also deserve our attention. The Lyme community is mobilizing once again to try to pass legislation, which is very much needed. Please help. In the past, it has successfully passed legislation that helps to address needs such as education, informing patients that there is more than one standard of care, and asking insurance companies to pay for long term antibiotics. A summary (last updated in 2014) can be found on lymedisease.org, which gives a sense of how long this has been a focus of the community:
Every year since 1998, advocates have tried to pass federal bills to create a balanced advisory committee and a federal program to address the growing epidemic. None of the bills even made it out of committee until 2014.
The time has come again to move this effort forward — by attaching an amendment to a major piece of health care that the Senate is voting on. You can help by calling or emailing your senator and asking them to co-sponsor the Lyme and Tick-Borne Disease Prevention, Education and Research Act (S. 1503) with Sen. Blumenthal (the link has all the information you need and a way to send an email).
If you’ve visited me recently at gotlyme.wordpress.com you may have noticed that we have a bit of a new look (and that we can now also be found at pghlyme.org). This blog was slowing down, and I made the decision to help revitalize it by joining its effort with that of the Pittsburgh Lyme Support Group, something I hope will be mutually beneficial.
The PghLyme Support group is trying to get a strong support network off the ground in Pittsburgh, and we’ve made this blog it’s front page. As part of that effort, we’ve also added a new author, Pittsburgh Lyme Support Group founder Bill Moore. He is listed on the contact page, and has written about his Lyme Story. Bill also founded the pghlyme facebook group, and I am very excited to have him collaborate on this blog. I hope you will enjoy his contributions as well.
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 :).
Senators Kelly Ayotte (R-NH) and Richard Blumenthal (D-CT) have introduced the bipartisan Lyme and Tick-Borne Disease Prevention, Education and Research Act of 2015 (S. 1503).
This is a NATIONAL bill, folks, which means it potentially subsumes the need to pass these on a state by state basis and has a big impact. It would help countless people if passed. We need you to help support this bill by sending a letter to your senator! It won’t take long, please do it because numbers matter. The more that our state senators see how many people in how many states care about this, the bigger the chance it passes. If you are reading this, you have been touched by Lyme in some way. Please help.
This was not my children’s lyme doc, but he is one of only a small number (2 or 3 that I know of) on the east coast who sees kids under 12, and a hero to many families with Lyme. Please help support him if you’re able. You can donate here. Even a small amount would make a difference, but he especially needs it by the end of the month:
I have to admit … there is a reason I don’t post as often: my motivation for posting on this blog for many years was the need to tell my story, reflect on my experiences, and (hopefully) help others in the process. As I’ve gotten better, the urge to post has gone down (aside from the obvious continual relapses, worries about my kids, my dog, and so on), and I think it’s likely to stay that way until I begin to find a new role, and a new reason to share. Right now, that reason is raising awareness in my local community and more broadly.
In recent weeks, I’ve had the unusual experience of working closely with a reporter to tell both my own story and that of my research. The results can be found in two articles ([about my research] and [about me]). The goal was to spread the word to folks in Pittsburgh that Lyme is here and spreading, and to watch out for ticks.
I’ve never done something like this before, told my story in such a public forum, and given someone else control over the words used, the supporting (or debunking materials), the photos, every aspect of how I was presented. Despite that, having written a blog gave me a feeling of familiarity. Little did I know how different it would be: The readers of this article, the folks who have contacted me, include almost everyone I know in my personal life, many of whom I have never spoken to about my Lyme disease. Continue reading “Raising Awareness”
Dear Lyme Youth,
Hello, I am glad to have a chance to have “met” you online, or at least received notice from Julia that you want to join us. Thank you for getting involved. As I’m sure you all know, our cause is a crucial one. Every step we make towards advocacy and awareness builds prevention. We don’t want anyone else to have to suffer from Chronic Lyme! I know we can all work together and support each other through this battle.
I guess a short introduction is in order. I’m Ariel, and I’m organizing LymeYOUTH for Lyme Action PA. I’m twenty-three, and I have Lyme and co-infections. I was studying community organizing at the University of Pittsburgh, but I am on medical leave due to my illness. So I have a double stake in this—I am dedicated to social justice and I want to spread awareness about this terrible disease. But I’ve never been a leader before, so please bear with me as I learn. My biggest hope for our movement is that future Lyme sufferers will get prompt, adequate and respectful treatment within the medical community.
We are organizing right now for a march on Harrisburg during Lyme Disease Awareness month. Hopefully, I’ll see you and other Lyme fighters there. Senator Greenleaf, who has been instrumental in trying to pass the Lyme bill for years, will definitely be there. We might even get Darryl Hall, who has Chronic Lyme disease, to play at the rally.
I am organizing the stories of youth with Lyme Disease and trying to create a database of your experiences. If anyone feels comfortable sharing their personal story with me, please let me know. I’d love to talk to you over the phone or through e-mail, whichever is best for you. If you aren’t comfortable, that’s alright, too. I have created an anonymous survey, which you can take right here.
Continue reading “RePost: Open Letter to Lyme Youth”