One year ago today I was tested for Lyme disease. Man. What a journey!!
Hold onto your butt, past Karla, things are about to get weird.
But don’t worry. It all turns out ok. 🙂
Holy crap you guys. Month 11 has been my favorite month!! Check this out. I had only THREE SYMPTOMS this month:
How AMAZING IS THAT?!? I AM GETTING WELL!!! The month 10 symptom list was also pretty minimal, but that fatigue I was experiencing in my eyes has definitely lessened considerably, to the point it’s not noticeable unless I’m looking for it. Yay!
This month’s “killing meds” included: Doxycycline, Zithromax and Bactrim DS. I have also been using a combination of herbals to break up biofilms. The combo has afforded me a LOT of wellness. I have spent the month hiking, bicycling, spending evenings with friends after long work days and generally having a completely normal human life!
Now, having the muscle tightness and related pain back has been a bit troubling to me. That symptom has been gone for a lot of months, and its sudden resurgence had me confused. Just as I was about to declare myself ready to head back into the gym for some weight lifting, that same old tightness in my erector spinae muscles came back. It spreads pretty quickly into my hip flexors, glutes and hamstrings.
It’s been a bit of a mystery because it happened a couple days before I started my month 11 protocol, which means new meds definitely aren’t to blame. I honestly can’t pin down any food item, activity or condition which it relates to. All month, I’ve had good days and bad days with it. But more good days toward the end, so I hope it’s back on its way out.
The most compelling theory I have about this issue is cortisol. You see, high cortisol can cause both muscle tightness/weakness and trouble sleeping… so it would explain basically all of what I experienced this month. And when I stopped my “cortisol maintenance” supplements my Lyme doc had me on, the pain definitely lessened. But that stuff is long out of my system and I’m still struggling.
I sort of wonder if the amazing new adventure of dating is part of this. You see, cortisol is known as a “stress hormone” but the truth is, it’s also an excitement hormone. GOOD stress also raises your cortisol. The stress of “omg he just held my hand,” or “I just texted him something vulnerable and awesome and I wonder how he’s gonna respond!” or holy moly the stress of “OMG I’m going to meet his FAMILY!”
It’s all fun, wonderful, fantastic development. And just like it does with all humans, the hypothalamic-pituitary-adrenal (HPA) axis kicks in to prep me for each event. A multi organ system, the HPA axis triggers the “stress response” system by releasing certain chemicals, such as adrenocorticotropic hormone (ACTH) and cortisol, rousing the body for action when it’s faced with a (good or bad) stressor. Senses become sharper, muscles tighten, the heart beats faster, blood pressure rises, and breathing quickens.
Normally, in healthy folks, the size of the response triggered is in direct relation to the size of the stressor, and once the triggering event is over, the associated response dies back down. But in Lyme impacted systems, this axis gets a bit damaged. The size of the response is often too large, and the effect often lasts far longer than is necessary.
Could it be that the experiences of falling for someone has my system all wonky?? Maybe. And, if that’s the case it’s well worth it. I expect that if this is the cause, my muscles and sleep patterns will settle back down as life falls into a blissful new rhythm that becomes normal. In the meantime, I will hold off on any weight lifting, focus on calm and nurturing pursuits and simply enjoy the relative smallness of my current symptom list.
As for treatment moving forward, well I HAD planned on swapping doxycycline and Zithromax for Amoxicillin and Tindamax so that I could enjoy some of this sunshine that’s been coming to Seattle. But my doctor and I took a look at the weather report and decided to keep me on this combination that’s working so well until the sun really demands I change it up.
Next opportunity to switch will be mid June, so don’t pull a switcheroo on me, Seattle weather! I’m going to need to stay in the shade just a little longer.
Well, that’s all the news from here. Thanks for following along! Happy healing.
How am I treating? It takes whole-body healing. Here are my areas of focus:
- Under the care of an ILADS Lyme-literate doctor, I am following the Horowitz protocol: antibiotics, supplements and some herbals. My best meds have been doxy, cefdinir and bactrim (for bartonella, my only known co-infection).
- In month 3 or 4, I did LymeStop in Idaho, and while I am skeptical that it was healing, it certainly may have helped. I did one follow up visit 3 months later and I did not take his supplements.
- I had my 23andMe results analyzed by Bob Miller and am following his supplement plan in addition to supplements from my LLND.
- I follow a strict no dairy/egg/wheat/sugar/alcohol/caffeine diet (I am sensitive to eggs). 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.
- I promote detoxification with Epsom salt / baking soda baths, exercise to keep that lymph moving, lemon water every day and a diet that skews alkaline.
- I have done “emotional cleanup” in my mental health life, including CBT therapy to address thought patterns that don’t serve me, letting go of a partnership that wasn’t supporting me or my healing, and making a strong investment in a positive social network.
Every Monday night I sort my pills. At this point in treatment, I take 184 a day (185 on Sundays). They’re all carefully scheduled out – some with food, some on an empty stomach, some far away from each other. It’s all timers and baggies in my world.
A month of these costs about $2200 out of pocket. That’s why I don’t own a car, and it’s a big part of why I sold my house last year. My insurance pays for the Rx meds, but that’s only about 6 or 7 of these. The rest are things I need to take in order to withstand the harsh treatment (probiotics, anti yeast meds, things like that).
Now, I don’t have a complaint in sight. My ability to cover this, to be healthy enough to work a demanding, high-paying job while sick, is a major privilege. And best of all, my treatment is WORKING and I’m getting well. But if you ask me, the whole system – the one that doesn’t recognize late stage or chronic Lyme, the one that forces Lyme literate doctors under ground, the one that doesn’t catch cases of Lyme earlier when it could be cured, the one where only certain types of medicine (the ones that make people rich) are covered… is broken. And THAT bums me out.
But mostly just… this is my life with Lyme.
Having lived with multiple sclerosis for 10 years before I was diagnosed with late stage Lyme disease, and dating with it all through my twenties, I’m no stranger to letting a guy in on serious health news. As a rule, I made it a 3rd date conversation: Long enough for them to get a sense of me as a whole person, but early enough that I’m not breaking hearts if they decide they’re not up for the challenge. “There’s something you should know about me,” I’d start. I’d tell them the facts with words like “incurable” and “degenerative”. I’d tell them how well I’ve done with MS, and what relapses look like for me. I’d tell them that I’ve been able to regain my health after each attack so far but that the future was unclear. Mostly dates didn’t mind at all. My guess is that most weren’t thinking far enough ahead to be concerned.
But Lyme is a little trickier to disclose. For one, it comes out earlier… usually on the first date when I explain why I’m not drinking, or why I’m ordering so carefully off the menu. When it comes up, I say “I have Lyme disease” matter of factly. They might nod and go “Oh, like from ticks?” I nod back. And unless they ask (which they never did), I don’t explain any further. Not yet. For the most part, these early reveals were a total non-issue. Each was met with mild surprise and interest, at best. So there, it’s out right? Not really. The simultaneous awareness of Lyme disease as a common bacterial infection and the complete unawareness of it as a serious chronic health condition makes it harder to explain what a big deal it really is. They think they know what “I have Lyme disease” means, but they have no idea. I’m still learning how to let this all out in an order that makes sense.
To be honest, I was way more afraid to tell would be gentlemen callers about Lyme than I ever was about MS. Multiple Sclerosis never took anything from my life. It gave me a few shitty weeks and months every now and then, yeah. But I was mostly healthy… at least between attacks. And I had a 100% normal existence. But Lyme… Lyme took my reliable body, my mind, my sense of safety, my favorite hobbies, my favorite foods, my very independence. I lost friends when I got sick with Lyme… a lot of them. I lost a long term partner. Lyme ruined the little world I lived in. I didn’t want it to ruin the one I was still hoping to have.
But low and behold, I did meet someone worth telling. Meep! I’d mentioned Lyme on our first date, and it had gone just like it did with the others. But as dates carried on, something about him was so promising and so wonderful, that I wanted him to know it all. I wanted to tell this fella… the one who’d given me such butterflies… how serious Lyme can really be. I wanted to explain that Lyme is complicated, and expensive, and probably a lifelong presence for me. I wanted to share my history of MS and Hashimoto’s and all these other conditions that I still feel like I should technically alert a prospective partner to. I wanted him to know about the controversy, and how weird my treatment plan will seem to some people. I wanted him to know about all the uncertainty and questions that I still have about what this will all look like in the end. I wanted him to know about this battle I’ve been fighting and the ways that the experience has changed me. Halfway through our 3rd date, it was time.
Turns out the surprise that evening was on me! I must’ve looked nervous as I geared up the conversation. Just a few words into it, he put his hand on mine. “Karla, I have something to tell you,” he gently interrupted, “I’ve read your blog.”
WHOA! There’s a reality I hadn’t considered! Welcome to dating in the modern day. Of COURSE he’d looked up my name just like I’d looked up his, and of COURSE he’d read this blog. I wasn’t sure what to say. After a few stutters, I smiled and I asked “Well ok, how scared are you?” and he said “I’m not.” He asked a couple of smart questions… ones about the relationship between Lyme and MS, about what food restrictions and careful health habits will need to look like in remission… we later talked about potential sexual transmission of the disease. But overall, he was largely unfazed. Shocker! He even beamed at me with hope and what looked a lot like admiration as I waxed emotional about my longing to be back under a barbell. He reassured me I’d get there, and we shared a high five. It all went so much better than I could’ve expected, really.
Because I am a lady with half a brain, I’m still seeing this delightful gentleman. And even though I am healthier at this stage than I have been at any point since I got sick, as dating goes on, the presence of Lyme in my life gets more obvious, and the extent of the impact more clear. We go out in the sun, and I have to keep covered up (thanks to side effects of doxycycline). When we eat out, I have to ask a lot of questions about the menu. I’m constantly taking pills. I have to make a lot of time for rest and detox. I sometimes say things like “I’m not quite healthy enough for that yet.” I share fears about upcoming treatment changes. I worry out loud. I have a sadness and fear in my answers when we each share our visions for parenthood (hello dating in your 30s).
I’ll admit, every time one of these things comes up for the first time, or ramps up in frequency or intensity, I get nervous. After all, being sick wasn’t the problem in my last relationship… it seemed to be the tedious, monotonous, sometimes limiting and isolating tasks of getting well that drove a wedge between my former partner and me. “Selfish” and “rigid” were new words used to describe me after the diligent work of living with Lyme disease came into my every day. It’s a burden… and I feel it. Shit, if I could walk healthfully away from all the effort, all the fear, all the caution, I happily would. I understand why partners do. I mean, they can.
But when this new fella lends me his sun hat and wears long sleeves in solidarity… when he pulls me by the hand into the shade while we wait for the light to change so we can cross the street and kisses me with a smile… when he encourages me to be brave enough to ask the waiter about the ingredients in my too-soft-to-be-corn taco shells… when he pours through my old blog posts with an open heart and interest in learning… when he asks questions about the pills I’m taking… when he asks me about how I herx… when he treats this like just another normal part of life… when he’s proud and unashamed to have me next to him just exactly as I am… I feel reassured on a deep level.
This is my first time embarking on a new relationship with Lyme in my life, and with it, I find I have an opportunity to develop a new relationship with Lyme itself. The ease and comfort this experience has presented me so far has allowed me to think a little less about the fear around rejection of my sometimes complicated life, and at least some about the benefits this whole journey has afforded me and, by extension, any potential partner.
Lyme is a bitch. I wish I never had to deal with it. And I’d give anything to remove the burden of my suffering from people who love me. But for all the challenge, it’s also given me a LOT. It’s edited my life so only the sweetest friends, most passionate pursuits and most rewarding past times remain in my days. It’s called upon me to explore my most inner depths, to re-train broken thought patterns and heal past traumas, to develop healthy coping mechanisms, solid boundaries and good mental health habits. It’s made me a better, more compassionate listener. It’s given me empathy in spades. It’s made me more grateful for every single gift in my life. It’s made me more likely to exclaim what is wonderful, and to say out loud what I love when I love it. It’s made me a bold pursuer of opportunity and adventure. It’s made me humble and emotionally open. It’s torn me to my rafters. And it’s forced me to rebuild. And what’s here after the wreckage… it’s better. I am a better woman. I am a better partner. Who knows, maybe one day I’ll be a better mom.
Lyme disease is a challenge I wish I didn’t have to deal with. And given the ugliness my limitations and dedication to self-care has been met with in the past, it may take me a while to lose the wince I’ve learned to give every time I let a someone I want to be with see Lyme’s presence in my life up close. But I’m learning to remind myself too, that those difficult elements… they’re part of why any would-be partner of mine has a woman like me on his arm. I can’t be separated from my struggle. And any man meant for a life entangled with mine won’t need me to.
Whatever happens, my hope is renewed that love can happen in life with Lyme. In some specific ways, it may even have Lyme to thank for a seriously upgraded experience.
The late night / early waking version of insomnia has been back for me lately. Now devoid of the classic panic I used to experience, I sort of enjoy the quiet hours of contemplation it affords me. I mean… I’d RATHER be sleeping. But this isn’t the worst fate. Anyway, tonight I ducked into my “drafts” folder on this blog… so many half written posts. The one below was the first blog I wrote here. And it’s a gem.
I wrote this just after I tested positive and was about to be diagnosed with late stage Lyme disease. Too afraid of sharing a part of my heart that I hadn’t acknowledged even to myself in so many years (nearly a decade), I didn’t have the guts to publish it back then.
Honestly, it’s scary to share even now. I never realized how intensely my MS diagnosis altered my perception of what I could have in life, of what I deserved, of what I was free to pursue.
But I read this now and I’m so moved. Because here I am, nearing the completion of my first year of Lyme disease treatment, and I find my perspective on my ability to be well has changed and along with it, my beliefs are changing and my hopes and dreams are catching up. I believe.
I believe I can get well.
I believe I can choose any future I’d like.
I believe I can let someone love me in a real, meaningful, “rely on me” kind of way.
And it’s fucking amazing. And terrifying. And exciting. And very very strange… like this sort of hope still doesn’t belong to me. But I’m opening to the shift. I am so excited to be sitting in a place of greater possibility than I ever allowed myself before.
Written in June, 2015:
I spoke to a friend the other day – another battler of lifelong chronic illness. Thanks to her encouragement, I had a momentary glimpse at something really exciting.
She’s happy for my impending diagnosis of Lyme. It’s a thing that only chronically ill people would understand, being happy for such a terrible diagnosis. But Lyme disease is different from things like MS (an incurable degenerative neurological condition I was already told I’d have the rest of my life). With Lyme there is good news: It’s treatable.
“You could get well,” she said. It stopped me in my tracks. I could get well. What a thought.
Ever since I was diagnosed with MS at 21 years old, ongoing wellness has never been an option in my mind. My mind was permanently changed with the idea that life is for right now, that tomorrow is a gift and not to make too many commitments. And as a Buddhist kid who really doesn’t believe in permanence in any real way, I’ve adapted well to this idea and have gone about my merry way building a life for me that I could step out of at any moment no problem.
She asked me, what would I do? What would I do if that wasn’t true anymore? What if tomorrow were just a little more sure? Surprising imagery came to mind – a family. Kids. Adoption. Partnership. For once not being afraid to ask someone else to rely on me, get close, say crazy things like “forever”. Wow.
The very thought of it made me uncomfortable, like those ideas don’t belong to me, like I’m not allowed them. She gently prodded “I think it’s important you start thinking about what you’d do with a healthy life.”
I don’t think I ever realized how much the acceptance of my fate with MS colored my perception of my future. Admittedly, if it was caused by was Lyme all along, and treatment could in fact make me well, the future would hold a lot more options for me. Of course, this early on, none of that feels like a good idea to dream about. I mean, who knows how any of this will turn out or how well I can really hope to be with treatment.
For now I’ll dream about the possibility for new dreams. Let’s start with that.
Every now and then, I cook a meal so delicious, so healthy, so varied and balanced in ingredients that I lament that I’m NOT feeding it to husband and kids waiting in the dining room. This is one of those meals.
To make the fish:
To make the spinach and mushroom side dish:
Now, it’s not paleo, but I did serve this with wild brown rice. I cooked it up in my rice cooker and drizzled with a little EVOO and salt.
Overall a delicious, omega heavy, nutrient dense dinner. Enjoy!
Today was a beautiful day for a comeback.
After a year of being too ill to hit the trails, today with my friends I enjoyed 7.5 miles and 2350ft elevation gain. I’m out of shape, for sure, but everything else worked just exactly as it should.