New Treatment for Lyme: Not Your Average Infection

Lyme isn’t your average bacterial infection, so treatment plans are usually only effective for so long. In addition, my doctor believes I’m suffering from at least one co-infection (aka another tick borne illness like babesia or bartonella). So our plan for now involves swapping the amoxicillin for plaquenil (a common treatment or preventative for malaria). I’ve taken this once before while traveling. I completely forgot the vivid dreams that come along with its consumption. I call them “technicolored hallucinations” because they are unlike the hazy scenes that normally accompany my sleep. While this could be a recipe for disaster, I’m lucky that my trippy slumber has only produced soul-pleasing entertainment with some top notch visuals. Last night I mentally visited various townhouses, only to discover that the ceilings were actually expansive galaxies: midnight purples and blues caked in sparkling stars … magnificent.

I’ve definitely herxed on this medication, with increasing amounts of pain in my joints. Herxes are always bitter sweet. I know that bad shit is dying, but my body usually takes a dive and I lose my regular functioning. My lungs seem to be less affected this time though, which is a bonus. I’m pretty jazzed that I can walk small amounts without huffing and puffing on other pedestrians in my path.

Due to my ongoing neurological issues, I will be starting IVs once weekly of Rocephin. My doctor will increase this IV treatment up to 2-3 times a week if I tolerate it. Then I will start back on the hyperbaric oxygen chamber. I will climb in right after my IVs to give the artful bacterial poos a real run for their money (P.S. I’m sorry I didn’t post more information on HBOT … I’m working on it right now).

With all this medication, I have frequent blood tests in order to make sure my liver and kidneys are functioning well. I’ve rocked all tests thus far! Yippee.

Dear Lyme, You Will Not Win.

Dear Lyme,

I did an hour long meditation last night. During the meditation I focused on my body and you, my disease, as separate entities. I envisioned my body as completely clean, free and healthy. I then envisioned you next to me, not inside of me. You floated freely, but I did not allow you to enter.

I rejected you. I rejected the notion that I am sick. I rejected my pain.

I embraced healing. I embraced my natural health. I embraced my functioning body.

As you know, I made the choice to jog today (some might call it walking while sweating profusely … whatever). I kept it up for 20 straight minutes, while I separated from you … flying further and further away from your negative energetic vortex. So you know, tomorrow I’m shooting for 21 minutes.

Yours truly.

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A+ For Being Human

I broke down this morning. There are days when I feel like I know how to be sick, and there are other days when I suck at it.

Navigating the waters of chronic illness is like being taught how to sail, then blindfolded, then thrown out into some choppy ocean with no coast guard. How the hell are you supposed to get to shore? Let’s pretend there are people on your boat too, like family and friends, relying on you to make your way home. They’re not allowed to touch the boat, but when you don’t do a good job steering, they feel it.

There’s a lot of pressure. You might do okay for a little while. Say the storm dies down. You’re like “sweet … life is getting easier. I can breathe without medicine, my blood pressure is normalizing … etc etc.” But then you remember you’re still blind-folded so you don’t know what’s coming. And, damn it, it DOES still hurt … and, damn it, it’s still really hard.

You want to be the captain that everyone looks up to … like Captain Sully that landed the flight in the Hudson … or that Scottish sea captain from the 1800s that Walt Witman wrote about. “That captain is so inspirational. Look at what he was able to accomplish under such dire circumstances. What bravery.” That’s who you want to be.

But what if you aren’t? What if you just want to hide below deck and wait until your boat either capsizes or it magically floats to shore? Would you take credit if it serendipitously washed up on sand? “Oh yes. I always knew I would make a full recovery. I just didn’t know when it would happen, so I kept trying. I really did. I fought every day to get better, and now I’m here.”

Lie. I don’t fight every day. I am retreating today. And I’m posting this so my recovery is honest. I isolate. I’m a wuss, a scaredy cat, a ‘fraidy pants … The little aches and pains get me down because I know this isn’t over. Not yet.

There is no rule book for chronic illness. You don’t get a grade. If you did, I would definitely be failing right now. I’m wallowing, full of self-pity … which I hate, by the way. The worst part about self-pity is how much I (and I’m sure a lot of others) hate having it. But then it pops up, and you’re like … okay I can be A) authentic about it, honor it and release it (which is an arduous process) OR B) I could deny the crap out of it, stuff it, and wait for the feeling to subside (which ultimately doesn’t help in the long run). Either way, the pitying is happening, whether you like it or not. And it’s not attractive.

I make gratitude lists, I do silent meditation, I get up and clean the house, I do yoga, I focus on self-love and my love for others, I try to engage in a community of other Lyme peeps, I try positive visualizations, I pray, I chant, I treat my body to good food, I thank the universe for all of the blessings I have in the way of healthcare, of monetary benefits, of good friends …

Well guess-fucking what?

Sometimes all those things, and all of everyone’s suggestions, and all of your internal attempts … They. Don’t. Work.

I’m here to tell you that –> IT’S OKAY.

I’m giving myself (and anyone else that needs it) an “A+” for being human today. If I could, I would hand out stickers. Instead, I will post a ridiculous photo of myself in the hyperbaric oxygen chamber … because it’s priceless.

Navigating the waters of chronic illness in a hyperbaric oxygen chamber --> This is smiling after 2 hours of freaking out in that small claustrophobic tank.
Navigating the waters of chronic illness in a hyperbaric oxygen chamber –> This is me smiling after 2 hours of freaking out in that small claustrophobic tank.

Onward and Upward

The most beautiful gift life can give you is hope. Over the last few weeks my progress has been steady … I’m more hopeful now than I have been since my treatment began in November of 2014. I managed to spend time with my father checking out the art scene for the first time in Durham where I live. I took a flight to New York for my sister’s baby shower. Despite one day of muscle weakness, I had a fantastic time. I felt free!!! Finally, my mother came back to Durham with me, where I spent more afternoons outside of my townhouse. She had a horrific virus that I didn’t manage to get. So, GO IMMUNE SYSTEM!

For anyone interested, here’s how progress with Lyme has manifested for me:

  • My blood pressure–both systolic and diastolic–averages 10 points lower (20 points on good days)
  • My irregular heartbeat has disappeared
  • My joints are less painful
  • My thoughts are less cloudy
  • Surges of panic are few and far between
  • I’m not out of breath when I walk
  • The vibration in my body is less intense
  • Tinnitus is quieter
  • Lung pain has decreased
  • Myalgia is less intense
  • A few lymph nodes are smaller
  • Rare muscle twitching
  • Pressure in my head has decreased

It feels good to know that my body is still my own : )

Next week I will be heading into the hyberbaric oxygen chamber Monday – Thursday. Will provide details on the experience.