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. 🙂

Interactive Tick-Borne Illness Map (And a Quick Update)

Discover Magazine is doing something really cool regarding Lyme. This website invites people to plot where they believe they were bitten by a tick and give a 100 word blurb about their story. It’s pretty neat!

When I went to plot my bite, I saw that there was less than 10 plots in California! More people need to fill this thing out. I know for a fact that there are 1000s of people in California who have Lyme. I also know that I am not the only person who was bitten in Sacramento county. Where are all my other Sacramento Lyme support group friends?

Out of curiosity, I also looked up how many plots were in Oregon. There’s only one person so far! Like I said, more people need to do this.

The point of the map is to show just how skewed the CDC’s numbers are. If even 50% of the people in the world with Lyme actually filled this out, we would really surprise some folks! This visualization shows just how wide-spread Lyme really is.

For all my fellow Lymies out there, please fill this out.

Here’s the link!

Interactive Tick-Borne Illness Map | DiscoverMagazine.com.

In other news, I’m really looking forward getting back on antibiotics. Some of my symptoms that had gone away when I was on abx are starting to come back. I’m having really annoying tinnitus, headaches, and insomnia.

The tricky part is that I can’t go back on antibiotics until I take care of my awful awful awful problems with Candida. I’ve tried 4 different anti-fungals and none of them have worked. This week, my LLMD gave me a prescription for some boric acid suppositories. I think it’s too early to tell whether or not they’re working yet, but I have high hopes. The quicker I take care of Candida, the quicker I can get back on antibiotics. And the sooner I get back on those bad boys, the sooner these stupid symptoms will get better.

Also, I just found out I need to get my wisdom teeth pulled. Yaaaaaaaaaay. It’s happening this Friday and I’m worried about it. I’ve heard horror stories of Lymies who get oral procedures done and have their Lyme totally flare up in the process. I decided to be honest with the dentist and tell him I have Lyme. I also told him I’m worried about what’s going to happen afterwards. He said that since my bottom right wisdom tooth is the only one that is a serious risk, he would pull that one first and do the others at a later time. So at least I don’t have to get all four out at once! I’m just trying to be as cautious as possible with this.

Wish me luck, friends!

Best,

Sofia