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. 🙂

My Top 6 Favorite Gluten Free Snacks

I am a snacking fiend. I love having something to munch on while I have down time. Unfortunately, being gluten free (and mostly sugar free) seriously limits my snacking possibilities. Luckily, after being gluten free and sugar free for quite some time, I’ve found a few tasty things that are on my diet AND are delicious.

Here is a list of my favorite snacks!

6. Luna & Larry’s Coconut Bliss Ice Cream

Coconut Bliss ice cream bar! Chocolate flavored!

Coconut Bliss ice cream bar! Chocolate flavored!

This stuff is awesome. Since I became sugar free, I kissed the possibility of having ice cream goodbye. Not only is this delicious product is sugar free, it uses agave nectar as a sweetener! No artificial sweeteners or chemicals in here! It’s totally gluten free as well. AND I have good news for you vegan folks. You can eat this!

It has a soft, creamy texture and has bits of coconut in each bar. It melts quickly, but tastes delicious. I definitely recommend it! Fun fact: The company is based right here in Eugene. Very cool!

5. Bumble Bee Sesame Bars

Hazelnut flavored bumble bar. Yummy!

Hazelnut flavored Bumble bar. Yummy!

Its tasty flavor and interesting texture is what sets Bumble Bars apart from other gluten free snack bars. Made almost completely out of sesame seeds, these things are really really yummy! They have a whopping fourteen different flavors ranging from cherry chocolate to hazelnut.

It only has 7 grams of sugar in each one. While that number could be lower, it is fairly decent for a snack bar. Most snack bars range from 15-30 grams in each bar. This makes a great occasional treat that tastes amazing.

The actual bar

This is what the actual bar looks like. Interesting, isn’t it?

4. Nuts

Yes, I know it sounds pretty simple. But nuts are pretty freaking awesome. They have many different health benefits, including healthy brain function, stress reduction, and cholesterol management. Plus, they are gluten free, sugar free, vegan, and dairy free. What a great snack!

Nuts!

Nuts! Photo credit:  Flickr user s58y

Grabbing a small handful of nuts instantly satisfies my hunger and tastes delicious. Cashews are my absolute favorite!

3. Quaker Popped Rice Snacks

Quaker Rice Snacks

Quaker Rice Snacks: Up close and personal!

These little guys are my alternative to the potato chip. With 13 grams of whole grain, they make a great healthy snack. Though they contain no gluten-based ingredients, Quaker does not actually test this product and therefore cannot advertise it as gluten free. Word of warning to my friends with Celiac disease!

2. Nori

A piece of nori

Nori is SO addicting and SO good! If I leave the plastic container next to me, I’ll eat the entire thing! That’s how good it is! Nori is edible dried seaweed that comes from red algae. It is popular in Japan and Korea.

It’s also totally gluten free and has only 1 gram of sugar per box. An addicting snack that is both delicious and guilt-free.

1. Synergy Kombucha with Chia

Me and my favorite kombucha

Me and my favorite kombucha

Kombucha is my favorite beverage of all time. Kombucha is fermented tea mixed with healthy bacteria and yeast. This particular brand, Synergy, of kombucha adds chia seeds to the mix. The texture is amazing and the flavor is delicious. I definitely recommend it.

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