Lyme, AIDS, and The Dallas Buyers Club

Yesterday, I saw the movie The Dallas Buyers Club. It’s about a rodeo man in Texas in the 1980s and his battle with finding effective treatment for his AIDS. After nearly dying from taking AZT, Ron decides to go to Mexico to pursue alternative treatments. He brings back a huge stockpile and starts selling them to HIV/AIDS patients all over Dallas and creates the Dallas Buyers Club. The FDA, doctors, hospitals, pharmaceutical companies, and even the IRS fight him at every turn.  The doctors that go against the grain are fired and get their licenses revoked. In the movie, according to the FDA, the government decides how people are treated for diseases, not Ron and other AIDS patients. His lack of agency fuels his battle even more.

Ron selling alternative AIDS treatments to Dallas patients out of his trunk

Ron selling alternative AIDS treatments to Dallas patients out of his trunk

Sound familiar? As I was sitting in the theater watching the movie, I just wanted to jump right into the movie and give Ron a hug. I, and so many Lyme patients, know exactly what he was going through. The government treats Lyme today like they treated AIDS in the 1980s.  There is confusion on how it is contracted, there are disagreements on how to treat it, and it is widely misunderstood- all while people are dying in the crossfire. Since the IDSA/CDC mandated guidelines are completely ineffective, patients are forced to look elsewhere for treatment.

AIDS treatment has improved drastically since the 1980s. This gives me hope that in 20 or 30 years, Lyme will be just as widely recognized. The government will have to look back and say “That was a mistake. That was bad.”

In the meantime, we have to be like Ron. Keep fighting for our basic right to have a opportunity at being healthy.

Best,

Sofia

P.S. Check out this article about Lyme that appeared in my school newspaper! You might just see a familiar name. 🙂

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IDSA Lyme Guidelines Protest in San Francisco Recap

Photo courtesy of Lymedisease.org

Photo courtesy of Lymedisease.org

Yesterday, Lymedisease.org  hosted a widespread rally protesting the IDSA Lyme Guidelines in San Francisco, California. The protest coincided with the IDSA’s annual meeting.

Sadly, I wasn’t able to attend, as I am in Eugene for school and could not make it down to California in time for the protest. I was there in spirit! Also, I was wearing my Lyme Disease Awareness t-shirt, so I’m going to count that.

My mom and dad did go though! They’re wonderful allies. 🙂 From what my mom reported to me, about 100 people came out to the protest. There was a Lymie rapper, various speakers, including former park ranger Jordan Fisher Smith from UNDER OUR SKIN, a stage for protesters to tell their stories, and a truck sporting a gigantic protest sign.

Here’s some pictures!

My mom's sign she took to the protest. The IDSA has it wrong!

My mom’s sign she took to the protest. The IDSA has it wrong! Photo courtesy of my mommy. 

Protesters and their signs. Photo courtesy of Lymedisease.org

Protesters and their signs. Photo courtesy of Lymedisease.org.

Jordan Fisher Smith, former park ranger and writer, from Lyme documentary, UNDER OUR SKIN. Photo courtesy of Kai West Photography.

Jordan Fisher Smith, former park ranger and writer, from Lyme documentary, UNDER OUR SKIN, speaking at the protest. Photo courtesy of Kai West Photography.

Lots of protesters and their signs. My mom and dad are on the far left! Photo courtesy of Kai West Photography.

Lots of protesters and their signs. My mom and dad are on the far left with their awesome sign! Photo courtesy of Kai West Photography.

 

It looks like it was a fun day! I really, really, really wish I could have gone! It’s events like this that really helps to spread awareness about Lyme. Though the protest probably did not make a difference in the minds of the IDSA meeting attendees across the street, it’s still important to come together and raise awareness to the passerby. 100 protesters is not exactly a large number and there definitely could have been more, but the important thing to remember is that members of the Lyme community came together to protest something that has affected all of our lives. And that’s really great.

Best,

Sofia