living moment to moment during lyme disease (borreliosis) treatment
Author: Sarah Snow
WordPress educator and/or mad scientist; my professional hobbies include breaking WordPress websites in front of audiences, investigating simple solutions to odd problems collaboratively, and designing lesson plans and courses for learn.wordpress.org. Ask me about caring for parrots, training stubborn Shar Peis, cooking super spicy recipes, learning American Sign Language & French, teaching and writing.
Lyme disease (and its co-infections) is a lot like a monster that constantly changes size; sometimes, it’s small enough you can step on it–squish squish–while other times, it grows massive to the point of crushing you.
But you never really know how big the bastard will grow, if he’ll disappear entirely, or just be a terrifying nuisance, another stumbling block in day to day life.
But you never forget what he is capable of. His shadow generates terror.
Today is both hard, and not hard at all.
On the one hand, there was Sunday night. We packed up the kayaks, blew up some tubes, and headed down to Titusville with some dear friends. As the sun set and the sky turned to inky purple, we slid our kayaks into the lagoon. The dark water lit up with a cerulean glow — and we paddled into the peaceful night, our faces lit with every splash or stroke of a paddle. The best of the best times.
On the other, there’s today. Brain fog. Exhaustion. Pain in his leg. The strange mottling in his hands.
I can’t focus because worry wraps icy fingers around my heart. Jason’s shoulder spasmed in his sleep last night.
I wonder if we’re transitioning back to darker times.
But that’s a problem for tomorrow’s Sarah.
I suppose it’s something I’m learning — to try and seize the moments of joy in the chaos, to really embrace them in a way that healthy people don’t pay any mind to.
I suppose that I feel shy in sharing the happy moments because the severity of this can be utterly soul-sucking.
Jason is relapsing. It’s not severe, yet. But it’s happening.
His leg is going numb. He’s having night sweats, albeit milder ones. His hands are mottled… white dots amid red splotches. He isn’t having the brain fog, fatigue issues, or pain–he does not have bell’s palsy.
It’s mild. So far.
We’re doing something differently this time.
He’s quitting his stressful job. He put in notice this week.
Three weeks until he can fully walk away from this place. Seventy hour work weeks, constant calls, not being able to eat or drink or run to the restroom or take a walk or end on time or BREATHE… done.
Hopefully we can fight our way back from this illness again. We are lucky in that we are in a place where he can work on his health for the time being. I’m sure financial stress will be tough, but… at least he’ll be able to rest.
This never gets any easier.
I am just as terrified as I was at this time last year.
It is with beaming, tearful joy that I write that Jason just received the news that he can stop taking his current meds (still mepron and zithromax). We had a call with his doctor today, who wasn’t surprised to hear he’s continued to improve and now feels 95% of where he started.
The outter third of his eyebrows have grown back, which means his pituitary is sending signals to his thyroid again. He feels well enough to start a gentle exercise regime. He has no numbness (except in one toe, since we are in a much colder climate right now than we are used to!) His limp has resolved. He can think straight, with little brain fog. He is no longer in pain.
“When people relapse, we already know which zebras we’re dealing with; we hit them hard with the right treatment, and people recover quickly,” per Dr. C on the phone this morning.
I didn’t write a post in early November, when Dr. C told him that, based on his progress, he thought Jason would make a full recovery (again). I think I didn’t dare to hope.
My Advice To You: Have Hope
It’s true: He’s better. It’s possible, even and especially with relapse.
He stops the meds this weekend.
It’s still possible he will still relapse with symptoms, in which case, he will switch to a new antibiotic… and I suppose you’ll hear from me again then.
For now, though, we will count our blessings and live each day with gratitude.
If you’re struggling, if you’re worried about your own lyme/babesia/bartonella relapse, if you, too, deal with this invisible plague, I hope you know: it can get better.
Jason is continuing to take the gentler pair, Mepron and Zithromax, the gentler sister to clindamycin and quinine.
He continues to steadily get better every day.
He was deliberating switching, but his slow and steady progress toward health is tiny, but measurable. And because we’re not switching medications as often as we were, he hasn’t really had another Herxheimer reaction since beginning this medication.
It has been an incredible reprieve. He is going to continue taking this pair for the foreseeable future before eventually switching.
He continues to take his vitamin supplements, but is off of virtually all aids; he hasn’t asked for a B-12 shot in ages. He no longer takes his thyroid medications. It’s so. heartening.
Life is steadily shifting back to normal,
which is such a welcome and wonderful feeling. We are so grateful–every day.
Real talk, it sort of makes it hard to morbidly enjoy a bad day–and not in the, “we’re walking on sunshine, yay!” sort of way where you just wake up smiling.
It’s rather in the sort of way where, when you wake up on the wrong side of the bed and you’re pissy, you stop and remind yourself that the love of your life is breathing easy at your side and feeling better and better… and so you just sort of shrug off the bad day and acknowledge that things have been so. much. worse.
So you’re still in not-the-best mood, but you acknowledge there’s no good reason for it. It kind of robs you of the ability to grumble, which is probably healthier overall anyway. And then you thank your lucky stars that there’s no good reason for it. You walk around with an awareness, an edge you didn’t before have.
Which is kind of annoying when you’re the type of person who enjoys a good grumble, but oh–how grateful I am to have the privilege of forgetting the harder times.
Anyway. This is just a light-hearted way of saying… things are so much better.
I deeply wish this post gives others hope.
Because even a second time around, it’s possible to get better. Really and truly.
Jason’s medicine (mepron) didn’t make it into the pharmacy until Monday, and we needed it Friday. Monday rolled around, and some of Jason’s symptoms were back; he had numbness in his hands and face, a touch of a limp, pain generally everywhere, and the mottling in his palms that accompanies it. It’s an odd symptom, that skin mottling… it almost looks like a heat rash on the days when it appears.
It’s less severe, but it’s shocking how quickly his symptoms come back if treatment is stopped.
We’re going to give this round of medicine another month, then likely switch to the next round of antibiotics. Jason hasn’t quite “plateaued” yet, meaning he is still steadily getting better (provided he takes it), but he’s starting to feel it level off, to stop feeling the gains quite so quickly.
He also has stopped taking his thyroid medication — he’s claiming it doesn’t seem to be making a difference in his energy levels, which are still low. We will see what the bloodwork shows next week, but the outer third of his eyebrows do seem to be growing in better, which suggests that perhaps his pituitary gland is firing again.
It’s weird how tiny things like dry skin on your face or feet or thinning eyebrows (but only the outer third!) can reveal how well your endocrine system is working. And yet, here we are!
As for me…
I’m working to give myself a little more grace this week. Things had been going far, far better for us, which has been amazing–Jason is the most incredible partner anyone could ever ask for.
His job is incredibly involved, and there’s no talking him into taking a sick day or so (I’ve tried until I’m blue in the face) — partially because if he takes a sick day, he has to work doubly or triply hard the next to keep his company chugging along.
So, I’ll just keep my head up and keep taking care of our home!
Backdated for Posterity, since I didn’t quite finish this post.
It’s hard to describe what living with relapsed babesiosis is like, both from a care-taking sense and from a sick person’s perspective.
Jason, my beloved partner and the sick one, reports that the symptoms are not quite as bad as during his first go-round with antibiotics, but he does have scary periods of regression with bell’s palsy, where his face and eye droops a bit, and periods where his leg is numb, electricity crackles along his skin, his muscles fight each other, he’s exhausted, and generally feels not-great.
The good news is that these episodes are shorter and less severe every time so far. 🙂 In between, though, it’s hard. I’m scared for him a lot.
What have you been up to?
This last two to three weeks have been really good. The period before it… less so. Jason had a lot of symptoms, a lot of fatigue, and a lot of days where he just couldn’t quite put his finger on how he was feeling, but knew it wasn’t super awesome.
It was really tricky because we were leading up to one of my dearest friends’ weddings, and we were in charge of throwing a COVID-safe, walking-heavy bachelor/bachelorette party.
The Hard Parts
Part of what is so challenging with lyme disease and its co-infections is how unpredictable it is. With babesiosis treatment, every single day is variable, a roll of the dice over what your partner and you as a caretaker can realistically get done.
The idea of, “your best can be different every day!” is laughable when there isn’t a “best”, there is just “survival” and being exceptionally gentle, patient, and loving with each other.
Every day, there are questions: Will there be a bad reaction to the meds? Will the lyme symptoms creep back in and we have to decide if we’re switching antibiotics again, or keep going? Will he be well enough to do basic stuff around the house for our animals, even if he couldn’t make it to the party or the [outdoor] wedding? What are the backup plans: Should I arrange to move everyone over to my awesome mother-in-law’s house (even though that comes with its own set of time-constraints and worries)?
I think what people don’t talk about from being sick or loving someone who is sick is the time it takes from you.
Not only does one partner have to care for their sick partner through each episode, but also all the responsibilities that the sick partner originally so kindly and thoughtfully helped with–including caring for the doggos and the parrots, thoughtfully washing and drying the dishes from dinner, helping to pick up around the house, opening stuck jars while you’re cooking, and all the things like that–they all fall on the care-taker, who is also running ragged.
That makes it tough for couples working through chronic illnesses together because it’s easy to run out of energy as you try to do it all and keep all the necessary balls in the air, but real talk, being sick is MUCH, much harder on the person who is sick than the caretaker.
Care-taking is hard; being sick is way, way harder.
Not only do they feel beyond awful as their bodies wage war on that internal invader, but people who are battling illness also have to swallow their pride to allow themselves to be cared for and feel guilt over the responsibilities they don’t feel well enough to attend to. Add anxiety over even being able to attend on occasions that are supposed to be festive, fun, and full of dear friends, and you’ve got one giant cocktail of negative emotions.
My partner is a trooper, though. Together, we’ve got this; we are exceptionally careful when it comes to the pandemic, so even though we spent a lot of the wedding alone and away from others in better ventilated areas, that didn’t stop us from slow-dancing in the sea breeze and sending loving thoughts to the bride and groom from afar.
Every day, we are finding the tiny moments that build to a better tomorrow.
Little by little, Jason is getting better. Slowly. 🙂
Three-ish and change weeks ago, Jas switched onto the atovaquone PLUS azithromycinpair, which, in theory, is equally effective as the clindamycin and quinine pairing, the antibiotics that helped him kick this to the curb the first time. Initially, I was skeptical; he was not improving very quickly at all and his symptoms initially seemed to be creeping back.
Now, however, I can see consistency in how well he is feeling. I can see a sparkle returning to his eye, his fast smile returning more easily. He is feeling more himself.
I am keeping all my fingers and toes crossed that we have crossed the worst of this, but we still have a long way to go. We just don’t know if he will regress, if he will need to switch medications again, if he will continue to get better, if he will have another Herxheimer reaction, if his brain will begin working appropriately again… any of that. It’s a giant question mark, but he got better once before and can do it again.
In three and a half months, we will see his specialist again. Hopefully by then, his pituitary gland will have restarted and he can quit taking his thyroid meds and testosterone again.
It’s tough writing when there isn’t much to report. Just a mixture of “blah” days mixed with the occasional bad one where I do my best to care for our sweet little family– and then the wonderful period where things start looking up. I never know how long it will last, so I always try to carpe diem.
So, updates are few and far between. But slowly and steadily, we are seeing real progress. ❤
A few friends reached out to me with some concern after I posted this comic on social media:
I had intended to just gently let some dear friends know that they are always welcome to reach out if they want. However, people were concerned.
So, how are we currently?
We are generally fine.
Sort of. 🙂
Jason started feeling better within thirty-six hours of taking his first round of antibiotics, way back at the end of July; he was not amazing, not perfect, not healthy, but his symptoms eased quite a bit. His muscles were no longer twitching or fighting each other, his limp had eased up, his numbness in his face and right side of his body had abated, among other things.
He miraculously, consistently got better during that first round of clindamycin and quinine.
Unfortunately, babesiosis is a bastard of an illness and tends to mutate, says Jason’s doctor. It’s a master of deception, in theory morphing from an active phase to a cystic one and back again–hence the constantly changing antibiotics.
Well, we are on round four of rotating antibiotics; unfortunately, Jason’s symptoms returned with a vengeance this last weekend. They are not as severe as when we decided to visit his specialist, but he is not doing so hot; he says that it feels like electricity is running up and down his limbs at all times, his night sweats are back, he is limping due to numbness and being unable to trust his leg, that sort of stuff.
I suspect this round of antibiotics has basically stopped “working” due to the illness re-emerging from its cyst form into the active phase, but I’m not a doctor and can’t know for sure. My hope is that this current set of antibiotics is destroying the cysts so that each rotation leaves him stronger and better. In the meantime, he also has the support of B-12 shots, thyroid meds (like me!) and testosterone pills to make up for the fact that his pituitary glad just isn’t doing its job.
We are taking it a day at a time.
So, today, we will be switching from his current drug pair (I forget what they are) to Mepron and Zithromax — these are new antibiotics for Jason, which is both exciting and scary. In recent years, these two antibiotics have emerged as a solid treatment for babesiosis, but without the nasty gastrointestinal side-effects of clindamycin and quinine pairing.
Fingers crossed we see even more improvement even faster.
Personally, I’m a touch exhausted, but trying hard to stay positive because what Jason is going through is so much harder. I only have to watch him fight this illness; I do my best to care for him, our animals, and our home as well in the meantime, but he’s doing the hard work of recovering.
So, that’s the update. Some good, some hard. We are managing, but very little of it is easy because every day is new and unexpected. It makes it difficult to plan, but we’re trying anyway.
Jason had his first Herxheimer reaction last week. It came… a little sooner than we expected based on his first round of medications. He was supposed to switch to his new meds in a day or so anyway when he started to feel like he was “Herxing”, but ended up feeling like he had the flu.
We chatted about it and decided that he simply wouldn’t finish his medication that day. After all, he will cycle back onto the Clindamycin and Quinine regiment in eleven days.
Some things to note:
It wasn’t nearly as severe as it was during his first go-round. He felt bad, but could function.
It resolved quickly–within 48 hours.
Lots of liquids and homemade chicken noodle soup helped him through it.
He has now transitioned onto his next round of meds; he felt pretty awful yesterday (fever, sweats, muscle pain), which may have been a reaction to the new medication. Because he is no longer on the quinine, he is having more neurological symptoms such as random twitches.
Today, however, he is alright. 🙂
I am so, so grateful that so far, his reactions have been minimal. Now, that doesn’t make any of them particularly fun. But, compared to the first time he was on this medication? He’s doing great. And I hope that’s a point of hope for anyone who relapses with Lyme/Babesiosis.
This is just this week’s update. Things are evening out, I hope – and the only way out of this storm is through it, so off we go!
Jason has been on meds for going on thirty-six hours–and I don’t know if it’s the B-12 shots, the massive amounts of supplements he is on to address his deficiencies, or the clindamycin/quinine combination he’s on, but he is already showing signs of getting better.
It took longer than I would have liked for him to obtain a quinine prescription. But. He felt better almost immediately after going back onto his babesiosis meds (clindamycin/quinine pairing).
When Jason and I were simply co-workers/friends (pre-falling madly in love) I didn’t have any real idea that he was sick or what Lyme disease (borreliosis) really was. What it meant for him. And there was no “us” to worry about.
During Jason’s first round of Lyme, I was just a work friend, one who was usually not in the same state. I knew very, very little about what was going on, or what it meant for him, his family, and his future.
Back to Before
I first met Jason (in person anyway) in 2016 on an all-staff work meet-up. There, he quietly revealed to some of us that he was sick, but no one beyond our team really knew what was going on.
He had something called babesia? What was that? Something like Lyme disease? Well, I’d at least heard of that one, but still didn’t quite know what to think.
I believed him when he told me, but he generally seemed… okay… to me. This was the man I met, Day Two of the all-staff meetup:
He had a swift smile, a brilliant mind, a wicked sense of humor, a love of re-reading, a work ethic second to none— these were the ways I would have described him. Not sick.
Sure, I noticed when he left the work welcome party early, but thought nothing of it. Maybe he was just a responsible adult (unlike me.)
I found it strange when he was absent from a mandatory work thing at the meet-up, but I found him later quietly answering tickets with our boss at the hotel bar in work’s backed-up queue. Maybe he was exempt because he was just that good—he’d worked there awhile by that point, after all, and I admired his skills.
How was I supposed to know he was so, so ill when I stumbled across him, happy and socializing, in the party suite later that week?
The Invisible Strugglewith Lyme
In 2016, I didn’t realize Jason was yo-yoing up and down, seizing those rare moments of wellness as they came, and barely getting by the rest—living in debilitating pain and exhaustion in those invisible in-betweens.
I knew something was wrong, but not what, or just how hard this disease can be.
Fast-Forward: April, 2017, six months later.
There we were. Another work retreat, just our team this time rather than the whole company. Over the course of the week, we became better friends. I thought he was just being nice by always taking the time to walk with me, since I always lagged behind the group wherever we walked.
It turns out I was dragging because my thyroid wasn’t working and he was dragging because he was about to have a horrendously terrifying and (somewhat) unexpected reaction to his medication. (I know, this whole story just SCREAMS Rom/Com, doesn’t it?)
To my knowledge, he had been fine all week. He had revealed in passing that he wasn’t doing great, and had bowed out of some after-work activities.
Still, he seemed… normal? If a little tired.
At the end of the trip, the experience had finally caught up with him. I could tell he wasn’t feeling the best when I hopped into the car on our way to the airport—I liked cigars and he was nice enough to let me tag along to a cigar bar where he was meeting his buddy, Jody, on the way out of the work retreat.
Jason seemed a little off, maybe. I didn’t know then that “a little off” meant “in terrible pain”.
Lyme truly is an invisible illness… until it’s not, in a single moment.
Before we headed to the airport, we smoked cigars with Jas’ friend Jody; Jas seemed maybe a little quiet, but otherwise okay.
So, when we eventually finished our cigars, bid adieu to his friend Jody, then arrived at the airport, I was taken by total surprise when he practically ran away from me once we dropped off the rental car. I previously thought we would meet up with another teammate, A, who was waiting to catch her flight, then hang out in the terminal until our separate flights departed. Instead, I found myself alone in the security line.
Once I arrived at my gate, I hung out by myself, perplexed and checking messenger as, one by one, our other teammates took off and landed home in our various states and countries. No word from Jason or A.
Finally, an hour or so later, Jason texted everyone that he and A had gotten on their plane — they shared a connecting flight and a row of seats.
“Sorry I missed your texts!” He wrote me in a private message.
“It’s okay. I hope you have a safe trip home!” I replied.
I received no response from him.
His plane took off, carrying him and his invisible sickness away. It soon became obvious why he and A hadn’t exactly been chatty online.
I was standing in line to board my own flight when A, our teammate sitting next to him on their connecting flight, messaged our private channel.
“Guys, something is really wrong with Jason.”
As the plane flew, the messages got scarier…
“His hand is turning blue. Like BLUE-blue.”
And even scarier:
“He can’t really breathe well—I don’t think it’s a heart attack, but I don’t know what it is.”
As his friend from afar, I had no idea what was wrong, but I was terrified for him. I’d seen him an hour and a half earlier–what had happened in between then and now?
The little bits and pieces of information A kept sending from the flight’s unsteady WiFi were beyond alarming.
Since Jason and I had gotten to know each other better at the team retreat, the next day when I saw him online, I 1. breathed a sigh of relief that he was still alive, and then 2. dared to ask him for the first time if he was really okay.
“I’m fine,” he told me. “This is just part of recovering from my illness.”
It didn’t seem normal to me, but he didn’t seem to want to talk about it, either.
I didn’t push—I didn’t want to be annoying. So I let it go.
Three days later, however, another work friend, D, happened to be visiting Jas. D was driving across the country and was crashing at Jason’s place along the way.
D ended up driving Jason to the ER for suspected blood clots during that trip (yet somehow found no evidence of them..) Turns out, Jason’s hand was still a vibrant shade of blue, and he still couldn’t breathe particularly well.
I was… not pleased. Hearing all of this in fragments, second-hand from work friends who just happened to be there in person with him (we work remotely), was devastating.
This is also part of why I’m writing this blog: I don’t want to keep our friends in the dark, either. I’ve been there, done that–the dark is not a fun place to be during difficult health journeys, either.
“Would you please just tell me the truth?” I asked, a little more harshly than I had intended. “You don’t have to be an island… I know I’m a work friend, but I’m also your friend friend—and I want to help.”
And so, he told me. All of it.
Was this a “normal” reaction while being treated for Lyme? Ish, yes. (Probably don’t smoke cigars when you have illness-acquired hypercoagulation & Lyme disease/co-infections.)
Was it common? No.
Was it dangerous? Yes, probably.
That was the last big die-off of the lyme and babesiosis Jason experienced; for the curious, I believe he was taking clindamycin and quinine (for babesiosis). As our friendship grew, he got better and better. He was Benjamin Buttoning, gaining life instead of aging.
And now.. now, I keep my fingers crossed that he can do it again. I’ll help him every step of the way. His doctor seems confident that he will recover from this relapse with fewer side-effects, and faster.
Fast Forward: 2021
I know that I haven’t seen the worst of this disease yet. But when, in 2019, we eloped in a whirlwind ceremony on the beach, when I promised him that I would cherish him in both sickness and in health, I knew what I was getting into.