Help Pass Federal Legislation

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 …

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 …

Re-Post: Ask your senators to co-sponsor Lyme disease bill (S. 1503)

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). (from LymeDisease.org) 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 …

Feeling better and a few firsts

First some news -- I am happy to say that I am no longer suffering from constant headaches, have less dizziness, am not totally soaked when I wake up (though still sweaty) and generally seem to be improving. I still tend to need either an early bed time or a nap or both and have …

Raising Awareness

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 …

RePost: Open Letter to Lyme Youth

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 …

How does all that misinformation online affect Lymies?

I have been working toward this for two years now, and I can finally talk about the work we've done with the help of many volunteers. My paper, "Competing Online Viewpoints and Models of Chronic Illness" will be published at the premier venue in my field, the 2011 conference on Computer Human Interaction. For those of you …

Repost: Thanksgiving in the Lyme World

For those of you not on the CALDA (California Lyme Disease Association) mailing list, I wanted to share the message they just sent me. I joined their list because they are extremely well organized and I often keep an eye on their site because it's full of great information. It's inspiring to me to see …

Pennsylvania Senate Bill

Once again, it is time for action. The PA Senate is primed to consider a bill that could protect doctors from sanctions, educate the public, and otherwise provide support for improving information about and treatment for Lyme disease in this state. If you read this blog and live in Pennsylvania, please help us! Notice that …

IDSA fails the test

Editorial note: I posted the content below but forgot to discuss the implications. Here goes: The restrictive guidelines for diagnosis and treatment of Lyme disease published by the IDSA (Infectious Disease Society of America)  have caused some doctors and insurance companies to restrict the treatment options available to patients. There is enough evidence that these …