Absence, Loss, and (Another) New Beginning

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.

 

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My loot!

 

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.

An end and a beginning

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Today I had my PICC line removed. I am not Better. I’m not even little “b” better. This is incredibly disappointing, and I have been feeling very emotional about the whole thing. I’ve been sick for 2 years and 1 month.

I will continue oral antibiotics to treat babesia, and hope for the best. Hopefully, the IV antibiotics took care of the Lyme (I did feel better for a few weeks there!), and these other meds will take care of the babesia, leaving me feeling much better by the winter. But I have passed so many of these hypothetical finish lines along the way, that I am growing very weary of them.

I am once again adjusting to a new idea of what my life will look like.

Over the past few months of this IV treatment, some really positive things have happened (and continue to happen!) in my life. Events that have brought me joy, humbled me, and truly lifted me up in difficult moments. I want very much to share those happy stories with you, and I will. Soon. I promise.

Right now, I’m not having many good days. I feel sick most of the time, to varying degrees, and I’m just trying to put one foot in front of the other.

Not Just Lyme

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Oof. Things have been pretty rocky since my last update. That flare-up of symptoms I was experiencing did not fade away after a few days as I have become accustomed to. Instead, it has gone on…and on… There have been brief moments of light – a couple of hours of energy after several spent resting, etc – but mostly, it has been horrible. Fatigue, ice pick headache, joint pain, neuropathy, brain fog, anxiety, drooping right side, and just to keep things interesting fevers, stiff neck, and a strange discomfort in my chest.

When Lyme makes my anxiety flare, it can feel like my heart is racing. When this happens, I take my own pulse, and typically it is normal. A couple of weeks ago, this racing heart feeling was happening quite often, and brought with it an odd sensation that I couldn’t quite identify. Was it chest pain? Was it tightness? Was the end of my PICC possibly resting against something it shouldn’t have been? Cue the chest X-ray, EKG, and every member of my health team listening very closely to my heart with a stethoscope. Fortunately, it turned out that everything with my heart and my PICC line were just fine.

Last week, I touched base with my doctor to let her know that I was still feeling very sick. I couldn’t get out of bed most days except for school drop-off/pick-up, and I had cancelled all my cognitive and physical therapy appointments because I was too sick to go. I told her about the fevers, stiff neck, and headaches. I told her I was hanging in, but just wanted her to know what was going on since I had never had a herxheimer reaction last so long. I was beginning to worry because my IV antibiotic treatment will conclude in mid-October. Feeling so much worse for so long with the end of treatment drawing near was making me feel a bit panicky. What on earth would we do next??

When my doctor got back to me, she said, “I think we got to the Babesia.”

Back in early 2015, I tested negative for co-infections, but we always knew that was not 100% dependable information, as the testing is not very accurate (I have read that only 2 strains out of an unknown number of existing strains of Babesia yield a positive test, for example). Based on my symptoms and experiences, we have assumed that I have both Babesia and Bartonella, two very common Lyme co-infections. Months ago, when I was on some combination of oral antibiotics, Bartonella symptoms had flared, meaning the drugs I was taking were getting to the infection.

Symptoms of Babesia include fever, headache, chest pain, and fatigue – all of which have been flaring for me. Now, if I wasn’t in the habit of tracking my symptoms on a daily basis, I may have only been able to tell my doctor I was feeling awful. But because I had my notes to refer to, I could pinpoint which symptoms were flaring, some of which I hadn’t experienced in many months, and pointed directly to Babesia.

Could it be that the IV rocephin has (I don’t even want to type it…….) nearly, kinda, somewhat…….maybe…….killed(???) the Lyme Disease, therefore bringing Babesia to the forefront? That could be what is going on. It all goes back to the analogy of Lyme treatment being like peeling the layers of an onion. We have peeled and peeled, and now we’ve hit Babesia.

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So, with less than two weeks remaining in my IV treatment, I am beginning to take mepron, a horrifyingly neon yellow liquid, which is slightly thinner than peanut butter and tastes like soap – and dear sweet goodness, I hope it makes me feel better.