July 6, 2017, today is day number 395 with my IV central line and day number 395 of treating Lyme Disease. Ideally this post would have come on day 365, marking one calendar year … but meeting deadlines is nearly impossible these days. Writing these posts take countless hours over a few weeks.
We are more than half way through 2017 now, the year is half-over yet I don’t feel like I’ve even participated in the last six months. Just like last winter, I got lost in a sea of symptoms that kept my head barely above water. It was a daily struggle. It still is.
For me, the longer this goes on I start to lose track of it all. If you’ve been following my posts over the last year I would expect you’ve lost count as well. For both our sakes’ here is a recap:
bitten and infected.
went to the Mayo Clinic desperate for a diagnosis but left without answers.
sent bloodwork to Igenex to test for Lyme Disease and Co-Infections.
lab results come back positive by CDC standards and I make my first trip to the Jemsek Specialty Clinic.
central line is placed and I begin IV antibiotic therapy.
I started to do a nose-dive. This was supposed to be the month that we could decide the IV was no longer necessary, but we keep it in place and I take a med-holiday while we re-stabilize my body.
we trial oral antibiotics only. I herx like hell and am not well. We’re back at square one.
after two rounds of oral meds it is determined that I’ve gone backwards and will need to restart IV meds. The opportunistic bugs, this time Babesia has stolen the show and is mad as hell that we’d attacked it over the last year.
The overall story here is that I’ve relaspsed.
Babesia is retaliating and kicking my butt so hard it feels like I fell so far back I’ll never recover. The next internal war is about to begin as we fight to knock it back down so my immune system can do the rest. If you want to spare the details of the last couple of months and just know what living with Babesia is like, click here. I’ve also included a video at the bottom of this post from my YouTube channel about day-to-day life with Babesia.
My last post was (mostly) written in May and on June 1st I had a phone call follow-up appointment. This was our second phone appointment in a row. When I first started with IV therapy it was required that I physically go to the clinic in DC at the end of each protocol (every four to six weeks) … so the break in travel is a welcomed one. Between March 2016 and March 2017 we travelled to Washington eight times, and this was when I was at the height of this illness so travel required wheelchairs and extra support. I could feel eyeballs burning holes through me, the expression on people’s face as they wonder why the heck you’re in a wheelchair, because “you don’t look sick”. If I was a good advocate I’d make a spectacle and attach green signs reading “this is what Lyme Disease looks like”.
The oral protocol I did in April/May consisted of 10 days on meds and 18 days off. At the end of my last consult (March 31st) I was told they’d be looking at how I was doing on my off days. If it was an ideal situation, we’ve treated enough that the bacteria load has been knocked down and my immune system could jump in and (finally) start to make some contributions. If I am off meds and am symptom-free it is a sign that my immune system is taking care of me. The goal was for 10-14 good days in a row. That made my eyes pop out of my head, was it even possible?
I started the protocol mid-April and I was certain I was now worse than I’d been before.
I was confused. Each day I keep a journal of symptoms, and when we looked at it I only had 3 good days in a row before I would crash. And crashing was harder than ever. I was full of pain, my joints felt like volcanos that were about to explode. Tendons in my arms and shoulders hurt restricting their movement and strength. Body aches that were so intense it went right through my bones. I couldn’t stand up to get off the couch or lift my head. I had reoccurring fevers, intense night sweats and ringing in my ears. I could continue to name of the physical symptoms but they list goes on too long. Cognitively I was having issues still, mostly mathematical, memory and word recall. There was one day when I was pain-free and mobile, so I ventured out to pick up my meds and stop at the grocery store. I was confident that I could make this trip on my own; the store is only a two minute drive from home. In the mean time I’d asked if my husband needed anything and he asked if I’d bring a coffee for him while he was at work. After years of caring for me and carrying me, I wanted to return the favour, even if it was only a coffee. While driving, I knew the rules of the road – that much I was capable of, but as I was driving I had lost my bearings … did I pass the store? Or was it ahead of me? Where is it? Turns out I did pass it. I picked up coffee for crew at work, left the parking lot and though I knew the street name of where I was going … I had no clue how to get to that street. This might not seem like a big deal if you live in a city, but I live in small town of about 7500 people. If you grew up here like I did, it is unlikely to get lost. But I was. I was terrified. And angry. Really angry.
Based on all of these things, we both had a gut feeling that on June 1st I’d be told I should do another round of IV meds.
And so it was.
My June 1st consult wasn’t even slightly surprising. The 10-14 good days that they wanted to see was only 3 or 4 at the most. We did blood cultures to ensure my central line hadn’t become contaminated and causing infection that resulted the fevers I’d been having. As it turns out I got a slap in the face from Babesia these last few months. In all that time I was taking ‘med holidays’ to stabilize my body it allowed for some opportunistic bugs to creep back up and take over. Immunologic regression at its finest.
It all started to make sense. I now understood that while I was on the med holidays my body was losing hold of things. I knew I’d slid backwards. I knew I’d been stressed. The last six months were full of so many external stressors. The physical symptoms were enough proof for me, but I’d overlooked the drastic emotions. I talked previously about the deep sadness I was feeling, and at the time I attributed it to a number of things: being sick for a long time, missing out on life, missing my friends, not knowing if and when I would start to be able to feel somewhat normal. And I was angry (which is out of character for me) I was angry at whatever forces came together and transpired leaving me this sick, angry at the people who’ve caused so much stress, angry at the friends who disappeared. I was angry at being stuck in this house for the last 19 months. I had to delete my social media accounts, seeing life and excitement happening around me just made it worse. I was in a tornado of anger, sadness and depression. It was choking me and being made worse by the ‘air hunger’ caused by Babesia. Daily tears became the next new normal in my life.
So I went back to the books and the literature. I re-read about Babesia. I wonder how I didn’t realize this myself. I feel comfort in the fact that bugs are in my head and causing this mental-emotional struggle rather than that I’ve truly lost hope. A couple of days after this appointment I came across an article written by someone suffering with Babeisa. I couldn’t say this better myself – it was like looking in the mirror as I read it. If you want to know what living with Babesia feels like, check out this article: How Babesia, One of Lyme’s Co-Infections, Has Changed My Life (you can create an account or just click on ‘skip and continue the story’).
That brings us up to the present day. I’ve done a round of IV antibiotics and travel back to Washington the first week of July. I am crossing my fingers that I feel well enough while we are there that I can do some sightseeing. I’ve been to this city so many times but only taking in pieces … my goal (other than to have good news at my appointment) is to document our travel in a fun and positive way. Before I was sick travelling was always at the top of our list and I intend to make the best of it.