TOUCHED BY LYME: Re-cap of San Francisco IDSA protest
How a fire alarm, a message truck, a couple hundred folks with signs and stories, and a “Lyme rapper” came together at the IDSA annual conference.
So I drove my minivan up to San Francisco’s Moscone Convention Center on the morning of October 5. It was full of sound equipment, posters and a couple of strong young men who were going to help me unload everything and set up for our protest demonstration in front of where members of the Infectious Diseases Society of America—the folks who make things so difficult for people with Lyme disease—were meeting. When, to our surprise, we saw hundreds (maybe thousands?) of people standing around outside.
Who were they? Couldn’t be protesters. Nary a Lyme-green T-shirt in sight. Turns out, an electrical fire had forced the evacuation of the building. Conference attendees were just hanging out in the bright California sunshine, a perfect audience for our message truck that had been circling Moscone Center since the event opened on Wednesday.
As we set up our stuff, a funny thing happened. The evacuees drifted over to watch us. They’d point to the truck or one of our signs: Why are you protesting about Lyme disease? They’d see a stack of The Lyme Times: Can I have one of those? An ID doc from the Netherlands wanted his photo taken with someone wearing a “Ticks Suck” T-shirt.
This was engagement with IDSA members on a one-to-one level! About a dozen of us fielded questions that kept coming. As more protesters showed up, they spoke with the doctors too. Most of the docs I talked with seemed mystified that there was any controversy about the IDSA and Lyme disease. They asked questions and listened to answers.
I posed this hypothetical to an ID doc from Texas who said she occasionally treats Lyme: What if your Lyme patient was improving on antibiotics, but wasn’t well yet? Should you be allowed to exercise your clinical judgment to continue treatment beyond the IDSA-mandated 28 days? Her response: of course. My response: you and I agree on that.
I spoke with doctors from Europe, India and throughout the US. And a university-based scientist who once did Lyme disease research “until the money for that dried up.” They were all unaware of any controversy over the IDSA Lyme guidelines.
Lorraine Johnson talks with IDSA bigwigs.
Rapper Zach Reed, aka "Revolt"
Then, something really remarkable happened. Individual people stepped up to the microphone to share their personal Lyme stories. Some poignant, some angry, all heartfelt. It was a magical, bonding moment. It really felt like we were a tribe, banding together for a common cause, working for a day when people with Lyme disease will receive the medical treatment they require and deserve.
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The mother of a daughter with Lyme tells their story.
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After people had had their say, Jordan Fisher Smith, the former park ranger featured in the Lyme documentary UNDER OUR SKIN, arrived. (Scheduled to speak earlier, he had been unavoidably delayed.) Didn’t matter. The timing was perfect. He took the stage and gave a rip-roaring speech to the audience, an excellent end-note to a productive day.
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Jordan Fisher Smith, speaking at rally
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My thanks to everybody who helped behind the scenes to help make this happen, as well as to all the Lyme warriors who withstood the hot sun in front of Moscone Center. Special thanks to UNDER OUR SKIN Director Andy Abrahams Wilson, who filmed the event for an upcoming project, and others who shot video for us to post on YouTube.
Here’s our video re-cap by Tony Hayman:
Photos accompanying this blog are by Stephanie Vandagriff of Kai West Photography and Tony Hayman.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. Contact her at dleland@lymedisease.org.
Thank you all who were able to make this event & to MAKE this event !!!! Be well <3
Somebody said they had trouble posting this comment, so I’m entering it for them:
Great re-cap of what sounded like an amazing event on a variety of
different levels! Thank you for posting and I look forward to more
details. I laughed out loud at your comments about all the people
outside and what a wonderful opportunity that must have been for
awareness!!!!
In Canada we are looking forward to David Suzuki’s program, The Nature
of Things Oct 10th where he delves into Lyme Disease issues. Another
opportunity to open eyes and continue dialogue.
A private member’s bill calling for a National Lyme Disease Strategy
Bill-C-442 was introduced by Elizabeth May in June 2012. My daughter,
Nicole and I spent 2 weeks in Ottawa in late may’13 meeting with
members of parliament and senators. Nicole explained what the problems
were with getting help here in this country and we were met with
enthusiasm and support from all parties. We are hopeful that the bill
will be passed and then the hard work begins to iron out a strategy
that actually helps patients. I will not rest until patients are given
what they deserve!
elizabeth wrote a piece about her bill in an ottawa paper yesterday
with a prime focus on gov’t issues:
http://www.hilltimes.com/policy-briefing/2013/10/07/why-we-need-a-national-lyme-disease-strategy/36186
take good care,
chris & nicole
I WAS DIAGNOSED LAST YEAR WITH CHRONIC NEUROLOGICAL LYME DISEASE IN 2012 AND IT HAS BEEN A VERY LONG ROAD 10 YEARS OF TRYING TO FIND OUT WHAT WAS WRONG, TEST AFTER TEST, FAILED DIAGNOSIS. MEDICINE AFTER DIFFERENT MEDS GOING IN MY BODY NOT TO MENTION ALL THE MONEY WAISTED.
COME TO FIND OUT IT WAS IN A BLOODTEST ALL ALONG AND ALL THEY WOULD HAVE DONE IS LOOK FOR LYME.
THIS IS THE SHORT VERSION
Thank you all so very very much for being there . Please
dorothy,
thank you for the wonderful write-up and GREAT photos of what all took place.
i hope idsa big wigs DO have a followup with lorraine and other VIPS in lyme/vb leadership.
bettyg, iowa lyme activist
Congratulations to your fine effort and thank you all who debated for all of us in this world. I live in Sweden but have been living in San Francisco and a big part of my hearth is still over there, I cant travel thus far away anymore, some because of age but mostly because of fibromyalgia -the diagnose I have got, its quite tiresome. All my love to you all you brave people. <3 <3 <3 <3 <3 <3 <3 <3 3 <3
I am 54, have battled Lyme for 20 yrs, despite expert treatment from Dr. B and Dr. Katz. Wheelchair bound for 8 yrs now, I’ve failed to reverse the profound neuromuscular weakness. Naturopathic modalities seem to help, but no definitive progress to date. I would love to hear from someone enduring similar issues…
Hi. I had problems walking a long time ago. Recently colon cleanses, biontology and NAET have kept me going or improved my health. happy to talk off line with you.
good luck and take care.
pat s
I’ve had Lyme for over 30 years, never diagnosed correctly until 6 years ago by Igenix labs. I up and around after being bedridden but by no means 100%. I had to retire early from a high paying job due to brain fog and working in a hostile environment.
I’ve spent over a million dollars trying to find out what was wrong and how to get better. I’ve just been diagnosed with cancer of the kidney.
It is a disgrace that our administrations at all levels have not demanded a tick reduction program, a cure, laws that repay victims and for their negligence.