Fresh Family Meals Made for Everyday Life

Finally a Diagnosis: Lyme Disease

Share this post:

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.

Leave a Reply

76 Responses
  1. Theresa

    Thanks for sharing your story. I have been very ill since November and finally received my diagnosis. I have been dealing with very similar symptoms physically and mentally. This time has been unlike anything I have ever experienced and by far my greatest challenge. I am looking for stories of hope and light and yours has given me that. I hope you are still doing well. Bless you.

    1. Cassie Johnston

      Hi Theresa: I’m so sorry to hear about your diagnosis, but I hope you start to feel better very, very soon!

  2. Erin Tungwenuk

    Thank you so much for your post :-)…I heard of a lady at my church who has Lyme disease and I’ve been wanting to find out more since. I’m curious how did you finally get diagnosed? We have ticks here in MT, a lot of ticks, and my husband has been struggling with ‘mysterious’ health issues for a long time. I’m wondering how to find out if he has it, especially if the Lyme test isn’t very accurate. Thanks so much! 🙂

    1. Cassie Johnston

      I saw a Lyme-Literate MD who diagnosed me based off of my test results, my symptoms, and my tick exposure. I hope your husband feels better soon!

  3. Irene

    I had not checked in on your blog in a few months and was so sorry to hear everything you have been going through. I had Lyme a couple years ago and ended up in the ICU due to heart related complications. I don’t mean to scare you but my heart problems actually got bad AFTER I was finally diagnosed and starting to feel better after a few days of doxycycline. Perhaps I missed it but it doesn’t seem you are getting any antibiotic therapy? I am super surprised to hear that because both infectious diseases doctors I consulted assured me standard therapy once Lyme has traveled to the heart is IV antibiotics (even oral doxycycline is not enough). I think this is also the case for late onset neurological issues from Lyme. You can google the practice guidelines for Lyme from the infectious disease society of America if you are interested. I hope your doctor has an extremely good reason for not providing antibiotics if you really aren’t taking them! Or get a second opinion from a qualified infectious disease doctor. I live in an area where Lyme is much more common so it was not hard terribly to find multiple doctors who were well educated on the topic. Maybe it will be worth your while to travel to a Lyme area if you aren’t finding the expertise you need?

  4. Jenny

    I’m so thankful you have a diagnosis!!!
    Keep us posted….while I have heard lots about Lyme, I’ve never known anyone who has had it. I’m interested to hear about your journey (hopefully a quick one!) back to health.
    Happy thanksgiving!

  5. Gabriela van Rooyen

    HI Cassie,
    Thanks for sharing. It is always good to hear true accounts of what people are really going through. Too many people just pretend that everything is going well.
    You have brought a a real issue in the modern life. Wellness is about taking care of your self. We as women need to continually support and help each other, but it is not always easy.
    All the best with your journey of healing.

  6. Elien

    Thank you so much for sharing your journey. I really look forward to seeing those non-food posts. You’ll get out of this as an (even) stronger woman, in a lot of ways. Sending you some energy.

  7. Oh big hugs. I’m so glad that you have a diagnosis, now you have a direction to move in.
    I know of a few people here in Australia who have symptoms of Lyme’s Disease but because the tests are so unreliable & they way it presents is so different in each person the medical profession is reluctant to diagnosis it. The government also says that it isn’t present in this country & the only way to get it is if you have traveled to North America. I’ll be passing on your blog detail to these people. Love Kerri

  8. At what point or what signs would indicate the lyme is gone? Like I’m just wondering how and when a doctor could then say the disease is gone.

    And is the assumption you got it from a tick? I think you need to write a tick awareness post now!

    1. I also have Lyme like 4times I had the bullseye and still a negitive positive negative blood test and although the dr seen the rash just put me on antibiotics for two weeks and say I’m good to go even when I tell them I don’t fell well my joints hurt in my knees elbows and hips I had a dr digest that I might have Lyme arthritis but because my blood work wasn’t positive he wouldn’t give me a referral for a specialists so here I am still sick with no hope of ever being well. But I’m happy you feel better what helped you? Thanks margaret

      1. Cassie

        Hi Margaret: I’m so sorry to hear you are struggling! I highly recommend contacting your local lyme advocacy group to get the name of a local-to-you lyme literate doctor. It sounds like you are dealing with well-meaning, but uninformed health care professionals. A lyme-trained doctor could probably really help you! Good luck.

  9. Jane

    Wow-so glad you did finally get a diagnosis. I had it as a 12 year old & caught it early. I had such fatigue, I complained every day about not wanting to go to summer swim practice. Coincidentally, I also had begged to join the swim team and absolutely hated it. My mom, who is a RN, just thought I was trying to get out of practice every day! She still remembers the moment I showed her the weird rash on my back (classic bulls eye). She knew immediately what it was & still has mom guilt about forcing me to go to practice!

    1. Cassie

      That’s awesome that you caught it so early (the rash really helps with that—I never had a rash). It’s definitely a lot easier to tackle when you catch it early!

  10. THIS: “I am in control of my own wellness in a way I never have been before.”

    Not that I would wish a Lyme Dx on anyone, but I love hearing this outcome from your whole ordeal. Continuing to send love and healing vibes your way, my friend.

  11. I’m so happy to hear that you have a diagnosis at last!

    Wishing you all the best on your healing journey and I look forward to reading all about it.

    PS. Your Thanksgiving recipes have been BLOWING MY MIND!

  12. Healthyish Holly

    I have been following you on Insta but first time reading your actual blog 🙂 Proud of you for now finding control that you feel good about! Two questions- is Lyme an auto-immune disease? When you mention “flare-ups”, it reminds me of how often our bodies can react in flare-up ways like autoimmune responses… hopefully that question makes sense. Secondly, more of a comment related to it- didn’t realize the Lyme had actually caused heart damage!! Wow, so thankful it didn’t get worse.

    1. Cassie

      Welcome to the blog! 🙂 And no, Lyme isn’t auto-immune, but it functions VERY similarly. So autoimmune diseases, the immune system basically attacks something in the body—so for example, thyroid. The immune system gets all discombobulated, and starts attacking thyroid cells when it shouldn’t. Lyme actually suppresses the immune system so it can take hold.

      Basically, the treatment for both is the same: support the crapola out of the immune system. Which is Lymies do a lot of the same stuff autoimmune warriors —cut out gluten, no dairy, lots of sleep, immune-boosting herbal support.

      And the reason Lyme suffers talk about “flare-ups” is because Lyme is a cyclical disease. It comes and goes—it can go in hiding for YEARS in people when it feels like it’s being attacked.

      And yes, Lyme is notorious for heart damage and neurological symptoms when it isn’t treated in the early stages. It’s a bad mammajamma!

  13. Amanda Costella

    It has truly been inspiring watching and following you through this journey. I am so glad that are you starting to feel more like yourself and that you have a clearer path going forward. Wishing you nothing but the best!!

    1. Cassie

      My third Lyme test came back with two positive bands and two indeterminate ones, which is considered a “weak positive”, but combined with my symptoms and history of tick bites, my doctors felt like it was pretty much a slam dunk.

  14. Marina

    Good luck on your healing journey… please do get in touch with my friend Jill Ennis from http://www.jillennis.com.

    Has jut been through exactly the same thing as you and is a truly wonderful human being. I know she’ll be able to help/support you.

    All the best and thank you for what you do xx

  15. Katie

    Yes!!! I’m so happy to hear that you finally have a name for it. Now you can keep kicking it’s ass! It’s so inspiring that you took charge and starting healing yourself. Keep taking care of yourself.

Meet Cassie
Meet Your Host

Hello. My name is Cassie, and I’m a healthy home cooking expert.

I'm a Certified Holistic Nutritionist, and I've been developing healthy recipes professionally for over 15 years. Food is my love language, and my kitchen tips and nourishing recipes are my love letter to you!

Learn More About Me →

Close-up of a woman holding a divided glass container filled with a prepped meal.

No-Stress Meals!
Meal Prep Made Easy

Tips, recipes and time-saving secrets to magical meals

FREE EMAIL GUIDE