TOUCHED BY LYME: Yes, the IDSA noticed us in San Diego
A valiant group of Lyme activists braved a record-breaking heat wave in San Diego Oct. 9-10 to protest outside the Infectious Diseases Society of America’s annual conference. Our long-term goal remains the revision of the IDSA’s odious guidelines, which make it so difficult for people with Lyme disease to get the medical treatment they need and deserve.
Our short-term goal was to catch the attention of individual members of the IDSA and inform them about how destructive their organization’s policies are to Lyme patients. (It always amazes me to realize that many individual members of the IDSA know nothing about the controversy concerning Lyme and the IDSA’s part in it.)
The protest in San Diego was jointly sponsored by LymeDisease.org, the Mayday Project, and the San Diego Lyme Disease Support Group. Here’s some of what happened:
Thanks to a generous donor, we once again hired a billboard truck to circle the vicinity of the convention center daily, 9-5, throughout the conference. (See above.)
We incorporated that same message into a Twitter campaign. According to Symplur Hashtags, a company that measures such things, @Lymenews (that’s us) was one of the “top influencers” of those tweeting with IDSA’s hashtag “IDWeek2015.” (Click here for more info about that.)
We were stationed in between the Convention Center and the entrance to San Diego’s historic Gaslamp District. So conference participants had to walk by us on their way to local lunch spots.
We were also right next to the Gaslamp trolley station, which offered both pros and cons. Good: great access for people riding the trolley to the protest. Also, because folks crossing the street often had to wait for the signal arm to rise, they spent their time listening to our message! Not so good: The noise from trains and alert bells was a constant presence.
On Friday, I was interviewed by San Diego’s local NBC station and it was shown several times on the local news.
Friday evening, we held a candlelight vigil to honor those who have died from Lyme disease. There was beautiful music, several speakers, the West Coast dedication of The Lyme Quilt, and the reading of names of people who have passed away from Lyme-related causes.
To our surprise, on Saturday, Dr. Paul Lantos, one of the IDSA’s top Lyme guys, walked across the street to shake hands and chat with a few of us. I don’t kid myself that we said anything to change his mind, but he listened respectfully.
Dr. Lantos asked me to name my top concern, and I said, “Well, for starters, why in the world did you choose a ‘consumer representative’ for the review panel who knows nothing about Lyme disease?” He said, “We’re actually doing something about that. Stay tuned.”
I asked him if he was familiar with the extensive comments that LymeDisease.org had submitted to the IDSA last spring, representing almost 100 Lyme disease patient groups. He said, “I read every word.”
He gave no details but said the IDSA will be giving a response to the public comments soon. Will they #GetItRightThisTime? (I must admit I’m dubious.)
Other highlights include meeting the other people who came to the protest. Here are a sampling of photos. We’ll post more on our Facebook page soon.
Organizers of the event, standing in front of the traveling Lyme Quilt. (Green squares memorialize those who have died. Red squares acknowledge those who are still dealing with Lyme.) From left: Maritza Padgett, of the San Diego Support Group; Dorothy Leland and Sandi Bohle of LymeDisease.org; Crystal OBarr and Alison Caruana, of The Mayday Project.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP for Education and Outreach. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at email@example.com. On Twitter, she’s @dorothyleland.
- October 11, 2015 at 4:59 pm
Thank you, Dorothy, and everyone, for all your hard work to realize this protest rally. I thought every part of it looked really clear in its messaging. And it can’t have been easy in that heat, so extra kudos to you all on your endurance! I notice that there have been comments from around the world of people thanking you all for the protest! – Robin
- October 11, 2015 at 5:34 pm
Great work, many thanks to all who participated. Thanks for the update Dorothy!
- October 11, 2015 at 7:21 pm
I want to thank Dorothy. I wonder if I had been there with my disappearing face (caused by Lyme and related dental problems) if I had commented if I would have been put on TV. I don’t look very good anymore. A comment on “some IDSA doctors don’t even know there is a controversy.” In Houston, I was told about a “top notch” infectious disease doctor. I had not been diagnosed very long. I was stupid or ignorant enough to go by that office to seek help. On the outside of the appointment desk was a sign saying if you even think you had Lyme (words to that effect), to go away and not bother that doctor. That was another blow to a very sick patient trying to get help. When you are very sick, are you supposed to know your illness is a political controversy??? NOT!!! I just wanted to recover. So there are many evil IDSA docs. I see red when I think about them. I sat is an IDSA docs office and heard a conversation between the doc and the receptionist. The receptionist had friend she was describing to the doc who from the conversation had a really bad infection, no idea what it was. The doc told the receptionist that IDSA docs did not treat that condition and to tell her friend to not bother any IDSA doc. So criminal. You do not have to even be diagnosed with Lyme to be refused treatment by an IDSA doc.
- October 11, 2015 at 7:52 pm
There are way too many of us fighting for our lives & unheard.
When will this torture end?
- October 11, 2015 at 9:08 pm
I planned an action once at an ID doctor appt – I scheduled one and brought various kinds of Lyme brochures, maybe 10 different ones. I had them waiting under my coat and when he started to say within the first five minutes of the appt that there wasn’t much Lyme disease in California, he found himself holding all the brochures that I immediately handed him! He realized that I knew a thing or two and said the appt was over. I then walked out and educated his office staff, who couldn’t walk out on me. Who says we have to just be a victim in their offices? Maybe we can start to take actions like I did. I got his staff educated that day. It’s very important to stay low key, and educating, as in “you, your family, your pets, your friends, and anyone you know or don’t know could get these illnesses. Wouldn’t you like to know more about what’s going on and how to protect and what to do if it happens?” I got my brochures from LymeDisease.org, http://www.IGeneX.com, http://www.lymediseaseassociation.org (a variety) and http://www.idexx.com
- November 2, 2015 at 7:03 pm
Hip!!! Hip!!! hip!!! to your action Robin. You are so brave. If we all did this we would just might get some action. We have to overcome their egos, and even more difficult, if they are human beings, we have to overcome the brainwashing they have been through. They are brainwashed into thinking they are little gods too. As time goes on, and I have fired as a patient, abused, told Lyme doesn’t exist, etc. I have become much more shy about even telling them (any doctors) I am sick. I have lost much of my aggressiveness with all the abuse I find Lyme patients get. To do what you did, I will have to overcome that. I am going to work at it. I am going to plan this action and dare myself to carry it out. If I can make myself do it once, maybe I can make myself do it again. God bless and reward you Robin.
- November 2, 2015 at 10:36 pm
Thanks, GMD! You go! And let us know how it works out. I mentioned where I got brochures from – I think you can get quite a variety for free still from the LDA (www.lymediseaseassociation.org). And perhaps LymeDisease.org has a couple they could send you? Just give the doctor’s office one of each and keep the rest to hand out to folks who are more likely to read them! This is utilizing the element of surprise – doctors don’t expect patients to act up! That’s what this is called – acting up. It used to happen all the time by AIDS patients who formed Act-Up orgs because they were being ignored. It’s very important to keep any intervention action nonviolent, and well-intentioned, as in really wanting to educate. Ultimately, I think we need to be well-educated and meet them with educational truth. Don’t take any bait re letting them put you down – keep the conversation focused on the problem, which is the spread of these illnesses.
- October 11, 2015 at 9:02 pm
I am so proud of and thankful to you & all the folks who made it out there.
It is ashame, in the United States of America, we have to go through such great lengths to fight for our own lives, to receive healthcare, for people to not think we are crazy or drama queens.
I am helpless & hopeless in SC but I was there with you in my mind.
Thank you from every bit of my heart.
- October 11, 2015 at 11:43 pm
thank you so much for your great QUICK comment to dr. lantos about why a NON-LYME person was chosen to be on the review team!!
great comments and photos above; love the LIME SHEET!
thank you to all who were there that day; didn’t hear what the heat was but in iowa yesterday was 85; HEAT wave for us.
i’m so sorry you went to an infectious dr. and they had the HIDEOUS sign on their desk about LYME patients.
i hope you have found an ilads llmd by now; if NOT, contact LYMEBARB@AOL.COM who is in california and a ranking member of lymedisease.org … she does 1 on 1 consults helping them.
god bless you all and best wishes for future quality of life again.
bettyg, iowa activist
about 47 yrs. chronic lyme this christmas
35 yrs. MISDIAGNOSED by 40-50 drs.
- November 2, 2015 at 7:15 pm
Bettyg. You see Betty, I have had Lyme treatment, 4-5 years was doing great, buy my intimidated second LLMD jerked my treatment. You know the story, lost my job (I am a NASA engineer, as a contractor, too stupid to know if I wanted to take the taxpayers I should have made sure I was a government NASA employee to get lifetime federal pension and non-medicare coverage.), lost my health, lost my insurance, lost all my teeth, family tired of it, lost everything. It has only been down-hill since then, 2008. I would definitely be dead now if not for the 4-5 years successful treatment I did have. I fear for my children and what they may be in store for. I am no exception; I am just like millions of other Lyme patients. I think I had Lyme from birth, but it took a long time to trap me. When it did, it took over and all the 24/7 horrors began intently. Only the 4-5 years of treatment ever gave me relief. Please don’t anyone forget the oral involvement. I think if I had known about that I might be well today.
- October 12, 2015 at 7:11 am
More Thanks from a 20+ year patient…and now Big Pharma has discontinued the one drug that has helped me!…More torture. But Thank You SO MUCH
for all you are doing! The photos are just great!! WE CANNOT GO AWAY!!!!
- October 12, 2015 at 7:43 am
- October 13, 2015 at 3:20 am
Thank you for all your hard work Dorothy.
- October 13, 2015 at 9:08 am
Thank you everyone who protested!!
- October 14, 2015 at 2:16 am
WE are all so grateful for the hardworking and persistent advocates that use tact and honor to get the point across. Thank you so much for speaking up for hundreds of thousands of sick and neglected Lyme sick people across the US AND the world. The ‘horses” may be led to water…lets’ hope they will drink now. It’s been way too long they have halted the advancement of adequate treatment and looked truth in the eye. With these infections and the damage they cause now affecting so many, INCLUDING some of these doctors friends and families eventually, they will have to take notice. Too many people are losing their lives and livings, they just have to be ready to change soon. THANK you again. I so wanted to go. Begged to go.
- October 14, 2015 at 4:45 am
Great work by everyone who was there. If just one IDSA doctor changed his/her mind about Lyme, it was worth it. If just one passerby, who knew nothing about Lyme, learned about the disease, it was worth it. You’re chipping away at the wall and it’s slowly coming down.
That Lyme quilt looks interesting. Is it coming through the Midwest anytime soon?
- October 27, 2015 at 12:00 pm
Grace-do any of these idiot doctors ever think about undiagnosed donating blood? I used to donate before I was!
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