The Boston Lyme Disease Protest

 

Protest Against The IDSA Lyme Disease Guidelines

On October 22nd, 2011, Lyme patients from around the country gathered on the sidewalks in front of the Boston Convention Center at the annual IDSA meeting. Over 80 people showed up to protest the guidelines written by the IDSA on how to treat Lyme Disease.

Who Is The IDSA?

IDSA stands for Infectious Disease Society Of America. It is made up of physicians, scientists and other health care professionals who specialize in infectious disease. Physician’s around the world use the guidelines that the IDSA creates to treat their patients. Insurance companies use these guidelines to determine what treatments they will or will not pay for.The IDSA (Infectious Disease Society Of America) is made up of physicians, scientists and other health care professionals who specialize in infectious disease. Physician’s around the world use the guidelines that the IDSA makes up to treat their patients. Insurance companies use these guidelines to determine what treatments they will or will not pay for.
In 2000, the IDSA made their first “guidelines” for Lyme Disease. They determined that treating early Lyme Disease with doxycycline (100 mg twice daily) or amoxicillin (500 mg 3 times daily) for 14-21 days was what they would recommend. For patients with late neurological disease affecting the CNS or peripheral nervous system, treatment with ceftriaxone (2 g once a day iv for 2-4 weeks) was recommended. And even though they said that response to treatment is usually slow and may be incomplete, that unless relapse is shown by reliable objective measures, repeat treatment is not recommended.
To see these guidelines Click Here to see IDSA Lyme Disease Treatment Guidelines.

 

 More on the IDSA

An Investigation Into The IDSA Lyme Disease Guidelines

Lyme Patients were not the only one to realize that these guidelines were flawed and leaving many patients left still sick, or with the unreliable tests for Lyme, leaving them not treated or even diagnosed at all. In 2006, an antitrust investigation was initiated by Connecticut Attorney General Richard Blumenthal. To read the outcome click here Antitrust Investigation

How The Protest Turned Out

I took this picture when I noticed the IDSA doctors were all looking down at us, taking pictures, from the windows of the conference center.

As all of us Lyme Patients gathered to protest, we looked up and noticed the IDSA doctors were watching us from the upstairs window at the Boston Convention Center. Eventually some came over and actually talked to us and really seemed to want to know more. We gave them literature to take home and look at later about Chronic Lyme.

Other IDSA doctors mocked us. One female doctor started laughing and waving and taking pictures of us. Another, Durland Fish, PhD, yelled at us and told us we were crazy and didn’t know what we were talking about.

But I think all in all, it was successful. Most doctors were polite and really seemed to be interested in what we were doing there. Many seemed interested in all the co-infections of Lyme. Even if they knew about that problems with Lyme Disease, they didn’t seem to know much about the other tick borne infections. Many Lyme patient came prepared with ILADS) International Lyme and Associated Diseases Society) brochures to hand out.

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    A Lyme patient hands out Lyme Brochures to people.

Remember as you look at these picures…

that most of these people have been friends online for years, and this is the first time they have met. This is probably the first time many of them have been out of their houses in months if not years.

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    Lyme patients do a “flash mob death scene.”

Part of the stigma with Lyme Disease is that we don’t “look” sick.

Look at these people, can you tell they are suffering from physical and neurological infections?

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    Lyme Patient talking to an IDSA doctor.

This is an IDSA doctor that actually asked Kim and I if he could take a picture with us. He didn’t speak clear English and I wonder if he realized that the protest was about the organization he belongs to.

 

What This Protest Meant To Me

The reason I support this protest is because I have suffered for over twenty years with Lyme Disease. I have seen over a hundred doctors in three different states. Even though I have had all the classic symptoms of Lyme Disease, and live in an endemic area, I was not even tested for Lyme Disease for fifteen years. Then once I was, and had a positive Elisa and a non CDC positive Western Blot, I was told two different stories by different doctors. Some said I had it, and some say I didn’t. Many said there is no Lyme in the area I live in, even though it is now found in all 50 states and on every continent.

I run an online support group and see thousands of families affected by this disease. I see kids that are losing their lives. I see moms losing their kids in custody battles because the courts won’t recognize Lyme as “real.” I see person after person, and family after family, losing their hopes and dreams. They lose their job, they lose their house, they lose their friends, while doctors ridicule us and tell us it’s all in our heads.

It is such a defaming disease.

So what this protest meant to me, was the hope that these IDSA doctors that dictate our treatments, will realize there is a really serious problem here. That this disease is real and not going away. It is not easily diagnosed and treated. We are losing a generation of children to this right now. We need help and we need it fast. Please look at these families and help us.

I made this video to show the world why Lyme Patients Came To Support The IDSA Protest.

Several Lyme Patients Tell Their Story.

Video by Paul  Mall

~ Written by Lisa Hilton

 





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