Touched by Lyme

When Liz Schmitz, of the Georgia Lyme Disease Association, used Facebook to locate other Lyme advocacy groups, she not only found scores of them in the United States, but a significant number in other countries. Among nations she found represented on Facebook are Canada, Ireland, the United Kingdom, Poland, Australia, France, Germany, Greece, Norway and South Africa.

Robin Krop, a San Francisco Lyme activist, finds herself riding taxis several times a week, because she has a bad hip and bouncing buses are too uncomfortable. Before she gets in the cab, she asks the driver if his shock absorbers are in good shape. If he says they are, then she gets in and instructs him to take only the most smoothly surfaced roads (she knows which ones they are) so it will be easier on her hip. At that point, he usually says, “What’s wrong with your hip?” And she answers, “I have Lyme disease. Have you ever heard of it?”

The widow of a man who died from complications of Lyme–even though officials say the disease doesn't exist in Australia–has formed a foundation in his memory. The Karl McManus Foundation aims to help increase recognition of tick-borne diseases in Australia, so that patients can get properly diagnosed and treated.

(Book review) INFUSING FOR LYMIES: A step-by-step guide with money-saving tips for buying and infusing IV medications, maintaining a PICC line, minimizing the herx reaction, insurance denials and more. (Note: this blog has been updated with new information as of Jan. 25.)

A small band of Florida Lyme patients gathered outside the offices of the Orlando Sentinel newspaper Friday, to protest its reprinting of the Chicago Trib's accuracy-challenged article about chronic Lyme disease.

Does anybody really tuck their pants in their socks?

Most people dealing with Lyme eventually come face to face with the need to improve their diet. It may include going gluten-free, and/or eliminating assorted other food allergens, and/or finding ways to incorporate more organic, fresh produce into their daily meals. The simple fact is, what you eat has a tremendous effect on how well you can fight back from chronic illness. However, it’s also a fact that, when you’re sick, it can seem well-nigh impossible to make fundamental changes in your diet.

Fifty-five (55) is a remarkable number. Did you know it’s the sum of the numbers 1-10? 55 is the speed limit in some places. And it’s the international direct dial telephone code for Brazil.

Here’s something else about 55. According to California health officials, it’s how many new cases of Lyme disease the state saw in 2009. (When I learned this at today’s Lyme Disease Advisory Committee (LDAC) teleconference, I hit the mute button on my phone and started screaming. ARRRRRGHHHHH! I actually haven’t stopped. Can you hear it?)

Lyme disease almost wiped out Tracey Silver's acting career before it really got started. However, after three tough years of treatment, she improved enough to land a recurring role on the popular TV show "The Sopranos." She'll speak about the ups and downs of her own Lyme experience, as well as the critical need for more Lyme research, at the LA Lymewalk October 3.

Readers of this column recently learned about Colby Lenz, a remarkable San Francisco woman experiencing both severe neurological Lyme disease and a brain condition called chiari malformation. As she awaits brain surgery, she uses her time to help educate the world about Lyme disease via the internet. Recently, on her blog, she wrote an open birthday letter to her 90-year-old grandfather. In this poignant message between generations, she eloquently offers a window into the hard economic realities faced by many Lyme patients. She has given permission for this blog to be re-posted here.