In the months that have passed since my IV antibiotic treatment ended and my PICC was line was removed, I thought many times of coming back to this space, to share how life is off treatment, and the changes I made in my life to adjust to my new-new-newest “normal.” But it’s been hard to put together neat little stories that can be nicely presented here, because this has been a very emotionally challenging time. Over the last several months, there were certainly moments of joy, fun days with family or friends, and some days without much pain. The majority of this time, though, has been something like grieving – grieving the last 2.5 years of my life which have been so much about this illness. I am grieving the person I used to be. Lyme has taken a lot of things from me, both big and small, and after all the pills, and all the injections, and the supposed golden ticket of IV treatment, it all just added up to a lot of disappointment, and a profound sense of loss.
In an effort to push myself forward into another phase of coping with this life-changing illness, I started going to therapy, and found myself a new project to focus on. The therapy is helping me to process all that I have gone through, and figure out how to move forward into whatever is next. The new project is that I have turned my dining room into a clothing boutique (what can I say? I don’t do anything small, I guess!) – but more on that later.
I finally came back to this space, in large part because I have arrived at the next phase of my treatment. Yesteray, I met my new Lyme doctor!
Leading up to my first appointment, I was anxiety-ridden. What would this doctor be like? Would she put me on trial for my illness? Would she criticize the treatment I had spent so much time, money, and energy on? Would she insist that I needed some bizarre treatment I’ve never heard of and costs thousands? Would her bedside manner be horrible? Would she, too, throw her hands up and have no idea what to do with me?
And what if she seemed great and capable, and prescribed a new treatment that I would put all my hope into? And then I went through the horrible roller coaster of treatment again…and it didn’t work?
I wasn’t sure I felt ready to start at square one with someone new. I wasn’t sure I was ready for the side effects and herxheimer reactions again. I wasn’t sure I was ready to potentially be disappointed again.
I was scared.
I am now very pleased to report that my new doctor is a quirky delight who GAVE ME CANDY (Yes! Candy for grown-ups at the doctor’s!), and IS A LYME SURVIVOR HERSELF. She seems immensely knowledgeable and capable, and I am cautiously hopeful about what is to come.
I won’t get too deep into treatment details just yet, but I will tell you that today I started a course of Coartem, an anti-parasitic aimed at killing Babesia, that very stubborn co-infection that afflicts so many Lymies like me. I swallowed just a half dose of them today (too scared to take it all!), and am now back in that all-too-familiar place of waiting to see how and when it will hit me. It will undoubtedly make symptoms flare, but it is anyone’s guess which ones, how much, when, and for how long.
Beyond this Babesia treatment, there is more on the horizon for me. None of it sounds fun, but all of it sounds smart, and most importantly, it gives me hope.