Finally a Diagnosis: Lyme Disease

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Back when I first got sick in August, there were a lot of (very kind and concerned) armchair doctors trying to diagnose me. You have celiac! Your thyroid is broken! You have an autoimmune condition! You have adrenal failure! You have M.S.! You have cancer! But the one that kept coming up time-and-time again was Lyme Disease.

It seemed like everyone was touched by Lyme and were (lovingly <3) concerned that I was fighting Lyme, too. Even though I have a history of lots of tick bites (helllooooo, country livin’), honestly, I mostly dismissed it for a few reasons (a) I had a Lyme test back in August that came back negative and (b) our area of the country isn’t considered a Lyme hotbed—it’s supposedly really rare to get Lyme in my region (even though my neighbor was diagnosed this summer, too).

But here I am, four months later, with an honest-to-goodness case of Lyme disease. There is a lot of complicated and convoluted things that we had to work through to get to the diagnosis (pro tip: Lyme disease testing is notoriously unreliable—something I wish I had known back when I had my first two Lyme tests came back negative). But, honestly, none of that matters now, because I have a diagnosis and a path forward, and friends, I am STOKED about that.

Lyme Books

The wonderful news: I’m already on the mend and was before I got a diagnosis. As many of you have noted on my Instagram stories, I am feeling much more like myself. My color is back. My voice is sounding normal again. I’m even working regularly again. I still have bad days (like this past Saturday: with a crushing migraine, nerve pain, and lots of shortness of breath), but overall, my health is improving. And with the help of both my medical and nautropathic doctors, we were able to do that healing without a diagnosis. I’m so glad I didn’t wait around for a diagnosis to start supporting my body.

When my family doctor first mentioned back in September that she thought what was going on with me was an infectious process, my family, my medical team, and myself all kinda went into hyper-drive to support my immune system. Would it have helped to know exactly what was raging through my body? Sure. But we didn’t. So in the meantime, we did everything we could to support my body. And it worked. So much so, that both my LLMD (lyme literate medical doctor) and LLND (lyme literate naturopathic doctor) are easing me into treatment for Lyme instead of throwing the full arsenal at it. My immune system seems to be working, and right now, it seems like a knee-jerk reaction to interfere with the good work my own body is doing.

Healing

That being said, we aren’t doing nothing. Not by a longshot. Lyme is a tricky, tricky disease that acts differently in everyone’s body and has even been known to morph and change when under attack. It seems my particular body is responding really well to dietary and lifestyle changes, as well as herbal and other immune support methods, RIGHT NOW. But that might change tomorrow. So we’re starting with a conservative treatment plan now, with a more robust treatment plan waiting in the wings if my health starts to slip (and there is also Plan C, Plan D, Plan E, etc.).

Some people need heavy doses of long-term pharmaceutical antibiotics. Some people need heavy doses of long-term herbal antibiotics. Some people can take a two-week round of antibiotics and never deal with Lyme again. Some people struggling with chronic, reoccurring Lyme infections that won’t respond to antibiotics at all. What I’m learning about Lyme is that there is no one-size-fits-all treatment plan, which is why I’m really glad to see that my medical team is as interested in supporting my body as it treating the infection itself.

The biggest thing we have to keep an eye on right now is my heart and my nervous system—places where the Lyme caused damage in the early stages of the infection. I’m currently under the care of a cardiologist who thinks my prognosis is really good (and even gave me the go-ahead to go back to light exercise after monitoring my heart for 24 hours). There really is only one thing that can heal my heart damage—time. So I’m taking it easy in the gym, supporting my heart with some herbs and supplements, and waiting it out.

Cass Holter Monitor

The nervous system is a bit more tricky (Lyme is notorious for going after your nervous system, so much so, they actually have a separate name for Lyme that infects your nervous system—neuroborreliosis). My nervous system symptoms were the most terrifying of my (long) list of symptoms. I had panic attacks so bad that felt like I wouldn’t survive them. I had dark and scary visions whenever I would close my eyes. I had deeply disturbing nightmares. I had numbness, tingling, and random nerve pain throughout my body. I had anxiety so bad that I wouldn’t leave my bedroom for days at a time. Notice I say “had” on all of those symptoms. Other than the occasional bad day, these symptoms have almost all retreated.

Therapy is really helping me work through a lot of the (very scary) stuff that was happening with my brain a few months back, and my naturopath has been supporting my nervous system. I’ve also been working really hard on my mindfulness—I’m now meditating everyday, multiple times a day—so if some of those scary anxiety symptoms do make a return, I’m better equipped to deal with them. I have no history of mental illness, so I was really poorly equipped to deal with sudden onset anxiety. I just had NO IDEA what to do. Between therapy and other work, I hope to be better able to handle the anxiety if/when it returns.

I do a lot of my meditating in the sauna—which is a great place to hang out when you’re fighting Lyme because the stupid little bacteria actually lower your body temperature to survive, so anything you can do to raise your body temp is good for you, bad for Lyme. I actually tracked my daily body temperature for a month straight, and I never got above 97.75—I mostly hung out in the 96.5 range.

Cass Sauna

My own personal struggle right now is going to be finding the balance between healing and getting back to my life. Healing has been my career over the past four months, and it’s been necessary, but life needs to move on (obviously, or we’re not going to be able to buy groceries). But, as my naturopath told me last week, it’s obvious now that I was burning the candle at both ends before I got sick—after all you have to have the right terrain for an infection to take hold, and in hindsight, I wasn’t at all taking care of myself.

I thought because I ate a lot of vegetables and didn’t eat fast food I was A-OK, but health and wellness go so beyond eating a daily salad (something I plan on exploring here on Wholefully more in the coming months—be prepared for some non-food content going forward). I wasn’t supporting my sleep. I wasn’t supporting my mental or emotional state. I definitely wasn’t moving as much as I should. I was phoning my wellness in, and I like to think of getting Lyme disease as my body screaming at me, “HEY. I NEED YOU TO STEP IT UP, K?” I’m really glad I listened.

My therapist and my husband both told me at the beginning of this that I’d eventually find the silver lining, and this is definitely it. I am in control of my own wellness in a way I never have been before. It’s quite empowering, actually.

Cass Gym

But, I want to get back to my life, although I don’t want to get back to the life that set me up to get this sick, so I have some figuring out to do. Thankfully (?) it seems my body retaliates pretty rapidly when I slip off the wellness bandwagon, so it’s not going to let me fall too far down the rabbit hole.

I think that’s when I’ll know I’m really healed—when I can eat a cookie or not sleep 10 hours a night or actually work a full day without having a “flare” the next day. I’m excited to get back to a world where I don’t have to be quite so vigilant. But for now, vigilant is my safe space. And I’m okay with that. (Although, ask me again on Wednesday when I’m cooking an entire AIP-compliant Thanksgiving dinner just for myself, and I don’t get to eat all of my Turkey Day favorites—womp.)

Thank you guys so much for your support—seriously, you have no idea how much it means to me (like, it means so much to me that when my therapist asks me who is supporting me, I tell her “my husband, my family, my friends, and my blog friends”). I love you all so much! <3

Cassie is the founder and CEO of Wholefully. She's a home cook and wellness junkie with a love of all things healthy living. She lives on a small hobby farm in Southern Indiana with her husband, daughter, two dogs, two cats, and 15 chickens.
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