New Year, New Antibiotics, New Goals

HAPPY 2014!!

It’s officially 2014. This year is going to rock! 2013 taught me a lot and I intend on using what I learned to make sure that this year is a great one. I’ve got a few updates for you all!

LLMD Appointment:

I saw my LLMD last week. He put me back on antibiotics! I’m really happy about this because my tinnitus, my headaches, and my hair loss are driving me nuts. These symptoms usually go away when I’m on antibiotics so I’m looking forward to this change.

I’m now on Rifampin and Bactrim. Funny thing about Rifampin. It turns my pee orangish red! Even though the pharmacist warned me about this, I was still shocked. Something I’ll just have to get used to, I guess. The warning label also mentions that it will permanently stain my contacts. I’ve been wearing my contacts every day and I haven’t experienced any staining yet. Let’s hope it stays that way! The Bactrim is okay so far. My main side effect is that I’ve been getting muscle soreness in my arms occasionally.

I’m just waiting for the herx. The past 3 times I’ve been on antibiotics, I’ve gotten a awful, awful herx about two weeks after I start taking them. I start school on Monday and I’m really hoping that I can somehow avoid the herx. Detox galore! I’m also loading up on my favorite probiotics, VSL, which I talk about here.

I am staying on my two herbals, AL Complex and MC BAR 1. I’m hitting this Bartonella from all sorts of angles. I’ve got this!

2014 Goals and Resolutions:

Okay, my 2014 resolution. I think it’s pretty great. Ready? Drumroll…. I’m going to buy myself flowers at least once a month! I know this seems like a simple thing, but I think it’s going to be good for me. In 2013, I had several moments where I was not kind to myself. I’ve realized that I need to spend more time treating myself to something. I do a lot of hard work and I should do something to thank myself! The flowers are a way for me to pause and realize that I am doing good things. So here’s to twelve whole months of beautiful flowers. Thank you to my cousin Heather over at SF Golden Girl  for the idea!

As for health and Lyme related 2014 goals, I would really like to get better at remembering to take all of my pills, powders, herbs, and drops. I have a pretty effectively organized pill box, but not all of my protocol fits in the box. I have to remember my AL Complex drops, my MC BAR 1 drops, my magnesium powder, my probiotic, and my boric acid suppository.  That’s a lot to remember! So I’ve decided to set a bunch of alarms on my phone to remind myself to take my various meds. How can I expect to make progress in my treatment if I’m still struggling to remember to take everything. This will be a challenge for me and I’m looking forward to improving.

What are YOUR resolutions?

Best,

Sofia

New Wheelchair!

New Wheelchair!

On Saturday, I got a new wheelchair! It’s a Quickie GT rigid frame ultralight wheelchair with solid wheels. And it’s Lyme green! I LOVE IT.
For the past four years, I’ve been using this crappy Invacare home wheelchair I bought off Craigslist for $50. I’ve used it so much, it’s falling apart. If I go down a slope, the whole chair shudders and almost throws me out. It was time for a change.
I first decided to get a new chair in June. So for six months, I fought and fought through the bureaucracy and misinformation that is my insurance company. Every time I spoke to somebody on how to get this paid for, they told me something different. Nobody knew what they were talking about. Finally, after about 3,849 fights with the insurance company and incompetent medical supply stores, I decided to circumvent that whole process and buy a wheelchair privately.
I scoured and scoured eBay and Craigslist to find one that would be an upgrade from the Invacare I was dealing with. I finally found one that was exactly what I wanted. Even though the seller was difficult, I finally got this baby.
I’m so so so happy with this wheelchair! It’s so light that I can lift it by myself without straining any of my muscles. Today I went Christmas shopping in it and I never got thrown out! It’s amazing. So easy to use!
This wheelchair will make my life so much easier. I’m often limited to the things I can do because of the clunkiness of my chair. This changes everything! I’m excited. 🙂

Best,
Sofia

Dementors and Snow

This explains so much

This explains so much

Having a pair of Dementors inside me would explain so much, including why my week was so terrible. These dementors are sucking out all the happiness in me and replacing it with despair. For some reason, everything gets awful around and during my period. My stomach becomes super sensitive, I majorly herx, and I get horrible cramps. The last 3 times I went to the ER was during my period.

This month’s period has been no exception. My limbs have been hurting, my arm and leg muscles are sore, and my joints are upset. Luckily, there’s been no ER this time, but I’m still feeling awful. I’m also really thankful for my boyfriend, who is excellent at distracting me from my pain. This morning, we watched videos of adorable baby sloths. Cute baby animals help quite a bit.

But on top of the two dementors hanging out inside me this week, it has been really, really cold here. This morning it was -6° F. I have never experienced this type of cold and I can say with confidence that I don’t like it. At all. My body doesn’t respond well to the cold. If I go outside without gloves, my hands will hurt for the rest of the day. So the extreme cold hasn’t been doing me any favors.

I can’t deny how pretty the snow is though! It’s fluffy and beautiful. I just appreciate it more inside looking out rather than vice versa.

My snowy campus!

My snowy campus!

Thank goodness for heaters, blankets, and my herxing pills! Hopefully things will get warmer soon.

Best,

Sofia

P.S. How do you all like the new layout?

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

Lymie Rapper at the IDSA Lyme Guidelines Protest

Last weekend, I wrote a post about the IDSA Lyme guidelines protest in San Francisco. The protest was a very positive event and had lots of cool speakers. This rapper, who goes by Revolt, has Lyme disease and performs across the Bay Area. This is his rap about the Lyme experience. I was completely blown away by his performance! His lyrics really hit home for me! I just thought I’d share the awesomeness with you folks too!

 

 

Best,

Sofia

Quick Update: 2AM and not feeling great

This past week has been a rollercoaster of good days and bad days. The first part of the week, I got a raging headache everyday- always in the afternoon. My temples felt like they were going to burst. Sensitivity to light and sound did not help either. The only thing that makes these headaches go away is sleep. Every time I decided to sleep it off, I wouldn’t wake up for hours, sometimes even the next day. That happened 3 times this week.

Weirdly, Thursday and Friday I didn’t get headaches at all! Amazing! Yet, as soon as I thought they were over and done with, they reappeared Saturday and again on Sunday. What’s the deal?!

Also, my hair has been falling out. I’m finding my hair EVERYWHERE- all over my house. My guess is that it’s from stopping antibiotics, which I’ve been off of for almost a month. Last summer when I took a break from antibiotics, this same thing happened. I’m determined not to let it get the best of me though! I’m going to try taking Biotin tablets, which has had some successful results with other Lymies. One more pill to add to the ever-growing list!

Lastly, joint pain again. As always, it’s worst in my hands. The pain makes doing just about anything difficult. I’ve never noticed how much I rely on my hands until it hurts to use them!

This is what I do when I have joint pain in my hands. Lay down and watch Netflix.

This is what about 60% of my life looks life. Bed+ blanket+ Netflix. Currently enjoying Star Trek. 

This is what I do pretty much every time I feel bad. Pop on Netflix and try and relax a bit. Netflix is great. Once you pick out a show to watch, you can sit there for like 3 hours and never have to use your hands! After one episode ends, it automatically cues the next one for you! Perfect for joint pain! And insomnia, too.

I’m pretty sure this is all happening because I’m herxing off of my new herbal, MC-BAR-1. The drops are tasteless and tiny; I guess I underestimate how much they’ll affect me.

Like every herx, this will soon pass. In the mean time, more blankets and tv! Yay!

Best,

Sofia

Pill Mountain

Welcome to Sofia’s Pharmacy!

Every once in a while, I like to document how many pills I’ve taken since the start of my health problems. In 2011, before I was even diagnosed, I started keeping all my empty pill bottles. Every time I fill up my weekly pill box, I seem to run out of something I take. That empty bottle goes into a box I keep in my room. This is the result of that box, all neatly organized.

A visual representation of my treatment thus far. These are all the pills I've taken from late 2011-June 2013.

A visual representation of my treatment thus far. These are all the pills I’ve taken from late 2011-June 2013. I couldn’t even get all of them in the picture! 

This is my mini pharmacy. I’ve got everything from empty Penicillin syringes to half-finished oral antibiotics to homeopathic remedies. Basically, if I took it or used it for a health-related reason, it’s here. Some bottles are empty and some are half full.

Here’s a quick scan of everything that’s in this picture, starting from the very back and working my way forward.

  • Lyme Literature
  • Herx and anxiety supplements
  • Pain killer, oral antibiotics and anti-fungal prescriptions
  • Symptom management supplements
  • Vitamins
  • Probiotics and detoxing supplements
  • Rare symptom management supplements, including topical creams
  • Liquid and granulated Stevia
  • Herbal liquid antibiotics
  • Bicillin L-A syringes
  • Pill organizer, eye droppers, liquid medicine measuring cups, and pill cutter

Yep, that’s my collection. Actually, that’s not even all of them. I took this picture in June and my collection has definitely grown since then.

You know, I really wouldn’t have nearly as many pills as I do if I was just tested for Lyme in the very beginning when my symptoms started. But that’s a rant for another day.

I’m planning on creating some sort of art project out of all of them after I’m done with treatment. I’m thinking a giant tick would be interesting. That’s one positive reason to keep my collection growing!

Gotta keep climbing this pill mountain.

Best,

Sofia

Fun with Smoothies!

Smoothie

I love smoothies! I used to buy them, but the ones from smoothie bars have a lot of added sugar in them. A naturopath I went to for a while suggested I start making nightly smoothies as a way to get more energy and nutrients without eating a full meal. At first I was skeptical, but I’m so glad she gave me this recipe, because I love love love these! They’re light, frothy, healthy, and surprisingly do not taste disgusting! I know the color is kind of yucky, but trust me, they taste good!! Plus! No added sugar! Just natural sweetness from a small amount of fruit. Yummmmmm. 

Ingredients!

  • 2 Cups coconut milk 
  • 3 or 4 ice cubes 
  • 1 Scoop Whey protein powder (The brand I have is BioGenesis, Ultra Pure Vanilla flavored)
  • 1 TBS of greens powder (The brand I have is Vitamineral Green) 
  • 1 TBS coconut oil 
  • 1/2 Cup berry of your choice (I used raspberries) 
  • 1/2 Apple, cut into chunks
  • A handful or two of kale or spinach

Coconut milk and kale! Yay!

Coconut milk and kale! Yay!

Greens Powder, Whey Powder, and Coconut Oil I use

Greens Powder, Whey Powder, and Coconut Oil I use

 

 

Preparation! 

It’s really super easy! Takes about 2 minutes. 

If you use raspberries like I did, make sure you put one on your finger and wear it like a hat. This is 100% necessary if your smoothie is to taste any good

If you use raspberries like I did, make sure you put one on your finger and wear it like a hat. This is 100% necessary if you want your smoothie to taste any good

  1.  Pour your coconut milk into a blender
  2. Add the protein powder, greens powder, coconut oil, and ice cubes 
  3. Add your kale, apples, and berries 
  4. Blend!! 

 

Looks a bit gross, right? Trust me, it's really really not

Looks a bit gross, right? Trust me, it’s really really not

 

See? I told you! Not gross. Really good and smooth. Yum!!!

See? I told you! Not gross. Really good and smooth. Yum!!!

The best part about these is that they’re actually pretty helpful. All the ingredients are super foods and are very beneficial to eat. Blend them all together and you get something pretty tasty. Whenever I make one, I wake up the next day feeling full of energy. 

Hope you like them too! 

Best,

Sofia 

Pill Feature: VSL#3 Probiotics

VSL#3 is by far the best probiotic I’ve ever tried. For the past eight months or so, I’ve had various problems with my gut, most likely as a result of being on antibiotics for such an extended period of time.

At my most recent appointment with my LLMD, he gave me a two week sample pack of VSL. He said his office only had samples of the Junior version, which are flavored packets rather than capsules. Each one has 225 billion live units! The most I’ve ever seen in a probiotic is 90 billion.

Image

VSL#3 Sample I Got from my LLMD

The results were absolutely amazing! In less than two weeks, all my gut problems were totally gone! I have no bloating, no indigestion, and no nausea. I’m in love with this stuff.

I’m actually rather glad his office was out of the adult version, because the Junior version tastes fantastic. I usually dread taking pills and supplements because of the bitter taste, but the Stevia-sweetened watermelon flavor of VSL actually makes me look forward to taking it!

I recently saw a coupon for it at Costco, but you can find it at basically any pharmacy. Just go to the VSL website and click the link that says “Find a US Pharmacy”. Type in your ZIP code and voilà! When I bought my refill from Rite-Aid, it was behind the pharmacist counter.

I think this is my favorite thing ever!

Best,

Sofia