Treatment Recap: Months 23-25

Time flies when you’re having fun! I have been updating the blog a lot less lately because I have been out ENJOYING LIFE! For the last 3 months I have been riding my bike, lifting weights, dating, playing with girlfriends, and enjoying the magic Seattle summer.

Indeed, I seem to have my feet planted firmly in wellness these days. At my last doctor’s appointment, ending month 25 of treatment, we went through my list of symptoms. Just one left: Ringing ears, which I have had consistently since fall of 2014 and just consider permanent damage. I’ve accepted this, deeming my wellness complete. I am happy to live in this state of health forever.

Sure, I have a few things that could be Lyme… maybe. My eye twitched a little last week. My sinuses are often swollen and itchy. My eyes are kinda sensitive to the florescent lights at work. After a REALLY intensely cognitive day, I struggle to think of the right word in conversation with friends.

But none of these things are ever consistent, they leave as fast as they come, they improve with rest / change of circumstance, and I hear my normal human healthy friends complain of the same types of things all the time. So, I don’t really think these are symptoms of anything, except symptoms of living in a human body.

Part of this, I’m sure, is due to the fact that I started a new job recently. The days are LONG and hard and full of learning. I have a new commute, I’m getting to know my teammates, I’m learning a new part of the Microsoft business, I’m figuring out all the processes and rules and documentation, I’m navigating the maze that is my new building and broader campus, I’m working 50-hour weeks solving complex business problems with people who are much much smarter than me and it is… intense. The very fact that I am able to do this is testament to me of my healing! This wouldn’t have been even a remote possibility just a year ago. But I do notice the worn-down sensations in my body come 6pm.

I’m sensitive to any change in my body. The truth is, I’m scared. Because all of a sudden, I have this life I’ve been dreaming of… I have the kind of life I wasn’t sure I’d ever see again. It’s here and it’s staying and it’s time. It’s time to embrace that, to say out loud I am WELL and to start weening off meds. And that’s scary. I’m scared it’s all going to come rushing back, and that I won’t be able to stem the flow, and that I’ll be lost once again… perhaps not to be reclaimed. And so, I notice every little thing my body/mind does that doesn’t seem quite right. I notice, and I measure.

And although I am scanning for issues often, I don’t live in fear. (Thank you therapy.) I live in acceptance. I live in now. But “now” is complex. I live in this body that’s been through a lot. I live in this mind that finds everything hard to trust. I live with the hard truth that I can’t possibly know whether I’m going to get sick again. I live with a conscience that means I look in the eyes of guys I want to let myself fall for and say, “I don’t know how this is going to turn out.” I live in a heart that has a hard time asking them to love me anyway. I live in mourning and shock, still… of everything I went through.  I live in awe of all the possibility laid out in front of me again.  I live in a body that wants to stretch, bend, flex and MOVE. I live with a sprit that wants to chase every challenge and conquer it completely. In moments, I dare to live in hope that I will get to experience all the dreams I am often too afraid to even admit I have.

I think most people expect me to be purely elated that I am well now, and… I am. I really am. On the days I’m on my bicycle with wind in my face and miles of road stretched out ahead… I often tear up with gratitude over everything given back to me. The freedom to experience the full capabilities of my body and my mind… the steadiness of my emotions and the consistency of living day after day in a body not routinely thrown into new and troubling states of disarray… it is EVERYTHING to me. But every time I feel that gratitude, every time I notice how great everything is, there’s a quick second experience that’s heavy, dark and horribly sad. There is a deep pain over the amount of suffering it took to get here. Over everything I lost. Over everyone I know still suffering. Over the complete lack of support we have. Over the invisibility of this fight and this condition. Over this heavy shit and ever present fear I have to carry forever now.

But I will focus on the bike. And the wind in my hair. The steady love of my few good girlfriends. And the beautiful eyes of curious boys.  And I will live right here, right now, in wellness.


For those wondering what treatment ahead looks like, a good friend of mine put it beautifully when she said “welcome to the balance beam.” I am well now, and the only question left is, what will it take to stay here? So over the next 6 months, I will taper off prescription antibiotics as much as I can, with an aim to transition completely to herbs. I plan to keep my diet pretty clean, but might sneak the occasional cocktail. I plan to get rest, exercise, and just try to walk this line of health. And as time and experimentation go on, I’ll find the right combination of “things I do” to preserve me here in good health. I’ll keep everyone posted as often as there is news!

Wishing you ALL happy healing.

-K

How am I treating? No single thing has gotten me well. Here have been my main areas of focus:

  1. Under the care of an ILADS Lyme-literate doctor, I am using antibiotics, biofilm busters, supplements and herbs to treat Lyme and Bartonella.
  2. For several months, I used 1 scoop of Cholestyramine twice a day to deal with mold exposure from my ill-fated home purchase in October 2016.
  3. I follow a dairy/egg/gluten/sugar/caffeine/alcohol-free diet. I eat paleo type meals for my “core” meals, but I do also eat things like rice, beans, tortilla chips, tacos, Thai food and the occasional vegan / gluten free pizza when I’m dining out with friends.
  4. I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, I let go of a romantic partnership that wasn’t supporting my healing, and I made a strong investment in a positive social network (online and off).
  5. In month 3, I did LymeStop in Idaho in addition to my antibiotic therapy. while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later. I did not take any of the LymeStop supplements.
  6. In January 2016, I had my 23andMe results analyzed by Bob Miller. And although  I discontinued his supplements, I had been on them for the entire year of 2016.
  7. In June, 2017, I began working with Samantha Gilbert who designed me a diet and supplement plan to optimize my genetic expression for health (namely addressing undermethylation and copper toxicity).
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