By Cassie Johnston
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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.
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.
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.
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.
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.
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
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I love love love this post so much. You are so empowering Cassie! I couldn’t be happier to hear you have a clear path ahead of you and are able to tackle this! And with a mindset like yours, you are going to show Lyme disease who is boss!
Thank you so much, friend! :)
CASS! I am so sorry you are going through this. It seems like you have amazing people on your side and that you’re a fighter. I wouldn’t expect anything less! Sending you good vibes ????
Love you, lady! <3 Thanks for the support.
We are truly happy that your search for wellness has brought you on the road to recovery. Love you lots! Mom & Dad J.
Love you! Thank you for all the (long-distance) support. <3 <3
I am so happy to hear that you have a diagnosis and, more importantly, that you are on a healing path! It sounds like the tools you are gaining as a result of this health crisis are ones that will help you throughout all of life’s tough patches. I also work for myself and it is so hard to get sick or have downtime when there isn’t a backup team to handle work stuff in your absence. Take good care of yourself!
YES. That’s what my husband keeps reminding me of when I’m having a down day—look a this amazing arsenal of tools and people I’ve assembled that I never would have had the chance to bring together before. I’m so prepared for anything health wise going forward!
And YES, bowing out of my business for a few months was so hard (but necessary), and I am so grateful you are all still here. <3
Sending you love, I am glad you found the devil
What a relief to finally have a name for what’s been attacking your body! It is easier to fight an enemy with a face :)
I’m glad you are able to take control of your health and thanks for keeping us updated!
Are you/have you guys told Juniper your official diagnosis? I didn’t know how much she knows, but I’m sure she can tell mommy hasn’t been the same the past couple of months. Sorry, personal question, feel free to ignore, but I’m a mom too so I always wonder how others approach hard subjects with their kids.
We haven’t told Juni anything specific. She’s still a bit too young to grasp the idea of diagnosis/treatment/etc. But she definitely knows that Mama hasn’t been feeling well, and that it’s important for me to rest/eat good food/take care of myself, and that’s what makes Mama better so she can play. :)
This is so very motivating for me! I’ve been battling Epstein Barr this year- I’ve had mono 3x and it’s been a huge wake up call for me.
EBV is such a jerk, too! I (suspect) I have a lingering EBV infection that is just dormant—I’ve had mono twice in my life. A lot of Lyme suffers struggle with EBV because Lyme just opens up your immune system to attack from all kinds of things. My naturopath has it on a list of things to tackle next if we think my Lyme is under control, but I’m still not feeling better (there is a lot natural/herbal medicine can do for EBV, if you’re interested in going down that path).
I hope you feel better soon! :)
I’m so glad you have an answer, even if that answer sucks. And you are a totally bad-ass role model for taking charge even before you had that answer.
Looking forward to reading more about wellness in the future. I feel like I’m walking a tightrope right now in a stressful time of life…I cruise along, feeling great, but the second I lose sleep or go a couple days without exercise, my mental state starts unraveling.
Thank you, my friend! Walking the tightrope is the PERFECT analogy. It can be stressful to have to be so vigilant (and then the stress wrecks your body even more meaning you have be even more vigilant), so my goal is to get to a place of healing where I don’t always have to be so on top of things!
I’m so glad you finally know what is going on with you and that you are taking the steps to heal your body.
We’re all rooting for you Cass!
Thank you! :)
Do you happen to read Hannah over at http://cleaneatingveggiegirl.com/2017/11/20/journey-to-diagnosis/ ? You have a lot in common, especially right now!
I hadn’t seen this, so thank you! I’ll definitely check her out. Sounds like a new Lyme friend. :)
I’m so happy you have answers and are on the mend! I was recently diagnosed with PCOS and, while not the same or as restrictive, I, too, have to come up with my own personal Thanksgiving menu. I know I’ll be disappointed to miss out on my old favorites, but I just keep reminding myself how awful I feel when I eat “off plan.” I don’t want to spend the rest of the day in pain and regretting my choices when I could be enjoying it with my family. Good luck!
Any diet-changing/life-changing diagnosis is a huge adjustment to deal with! I’m so proud of you for taking control and rocking it. :)
And honestly? I’m mostly just bummed that I have to cook everything for Thanksgiving for myself. Ha! I’m so used to sharing the work with my mom and sister.
And yes, you know that (ridiculously terrible) phrase “nothing tastes as good as skinny feels”? Well I say, “nothing tastes as good as not feeling like death feels” and I 100% believe it. I love food, but I’d eat chalk for the rest of my life if it meant I never had to go back to how I felt before.
Cassie, I am so happy to hear that you have found answers and are now able to move on and up! I look forward to reading much more about this next stage in your wellness journey and how to make this a whole bodied approach to healing! I know I need the tips more than anyone :) blessings girl! So proud of your growth this season!
Thank you! I’m excited to share more of how I’m healing (and still keeping up with some yummy recipes). I’m learning SO much more about a wholistic approach to wellness—I can’t wait to tell y’all what I’ve learned.
Your attitude is so inspiring! I am lucky enough to not have any health-related issues (aside from anxiety), but I’ve really excited to see some wellness content here. We could all use the reminder and inspiration to take better care of ourselves! I love to work out, but I know that isn’t enough. So I look forward to joining this journey of wellbeing with you!
Anxiety definitely isn’t a small thing, so I’m hugely proud of you for dealing with it! And thank you! I’m excited to share more.
I’m so glad you have a diagnosis. While you still have the treatment and recovery road ahead, it’s a big step in the right direction. You are kicking butt right now! Keep it up. Thinking of you as your endure the healing journey.
Thank you so much! :)
Cassie, You are so strong & determined and I know you will beat this! You have come such a long way in the last 4 months & I look forward to you sharing all you have learned. I would love to hear more about meditation.
Thank you so much! :) I’ll definitely have some meditation posts on the docket.
I’m so happy to hear you have a diagnosis. I’ve been thinking about you and hoping all is well. Happy Thanksgiving to you and your family. You have a lot to be thankful for. ?
Happy Thanksgiving to you, too! :) And yes, we all have lots to be thankful for.
So happy to hear you know what you’re dealing with and your on the mend. Not an easy fix but knowing now has got to be such a relief. You have a lot to be thankful for this year for sure! Btw, I tried your drunken beef stew last weekend. LOVE IT!
Yes, but knowing is the first step, and I’m definitely excited to know! And I’m so glad you liked the stew. It’s a favorite in our house!
Thanks for sharing your story with us. I’m so glad you have a diagnosis and I’m so impressed with your commitment to yourself to figure it out and try to heal even before that. You are really an inspiration to all of us. <>
Thank you so much, Bridget. This really means the world to me. :)
Amazing! I am so very thankful that you have shared this with us. The part where you mention that you were phoning your wellness in really resonates with me. I feel like maybe I shouldn’t take so much of my eating healthy, or my good metabolism, for granted. I must actively support my total wellness. Praying for you, Cassie. I have loved your blog, and continue to love it as it changes with you. Take care.
My sister and I were talking about this last weekend—you get to a certain age (which, ahem, apparently for me is 34) where you can’t just phone it in anymore. Like you said, you have to really start actively supporting your wellness, and that’s an exciting change, but still definitely a change!
So happy that you have a diagnosis. What a huge weight off your shoulders that must be. Thank you for sharing.
Yes, having a name for it brings me such relief! Thank you. :)
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.
YES! Getting a name and bringing the sucker out into the daylight makes it so much easier to fight it.
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
Thank you! I’m looking to make more Lyme friends, so this is a great resource. :)
Thanks for the update Cass. What a crazy few months and i’m glad you finally have a diagnosis!
The first person I heard about Lyme disease from was this lovely blogger. You may find something helpful amongst her writings about health and food and family :)
Thank you for sharing! I’ll definitely check her out. I need as much Lyme friends as I can get. <3
Did you eventually get a positive test for lyme disease or did you and your doctors figured it out solely based on sympthoms?
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.
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!!
Thank you so much, friend! <3
Glad to hear you found a diagnosis and that you are starting to feel better. Thanks for sharing your journey, ti’s inspiring!
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.
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!
I have a good friend who has Lyme disease. She drinks 2-4 oz of colloidal silver twice a day. She swears by it.
I’m so glad she figured out something that’s helping her!
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!
Thank you, and I’m so glad the recipes are working out for you! :)
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.
Yup, same. There is definitely a bright side to this whole thing. Love you, lady! <3
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!
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!
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!
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
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.
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
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.
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.
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.
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?
I have a lyme-literate doctor—and he’s wonderful! Thank you so much for your concern, and I’m glad you’re on the mend!
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