By Cassie Johnston
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After months of tests, doctor’s visits, waiting, worrying, and feeling incredibly ill, I was finally diagnosed with Lyme Disease back in November of 2017. We’re now six months out from my diagnosis, and considering this is the last week of Lyme Disease Awareness Month, I figured it was high time I gave you guys a bit of an update on my healing process.
Since my diagnosis, I’ve been under the care of an incredible group of health care professionals—MDs, naturopaths, midwives, therapists—I’ve honestly seen them all! And the biggest thing I’ve learned: I am the only one that is in control of my health. I can get advice, guidance, and access from my team, but I am the one with the power. When I was first sick, I was so desperate to cede my power to someone who would just “fix” me, and it just flat out didn’t work. It wasn’t until I reclaimed my power and began advocating for myself that I started to truly heal.
In general, I am in a much better place than I was six months ago. Just last week, I actually had a review of symptoms with my LLND (Lyme Literate Naturopathic Doctor), and she was reading over some of the symptoms I felt back when I first saw her in October. There were symptoms on there that I had completely forgotten I was even dealing with at the beginning! Overall, my health is in a much better place.
That being said, I’m not healed. The path to a place of healing isn’t straight, and I have bad days and weeks pretty frequently still.
When I was first diagnosed with Lyme, my LLMD (Lyme Literate Medical Doctor) was actually pretty pleased with how my body was fighting off the infection on its own. By that point in my illness timeline, I had been feeling sick for about four months, and my body was seeming to finally get the upper hand. I wasn’t necessarily getting better, but I also wasn’t getting worse. He felt comfortable enough with my progress to not put me on antibiotics (the “standard” treatment protocol for Lyme infections) and instead gave me the go-ahead to proceed with treatment with my naturopath—with the understanding that if I had any major setbacks, antibiotics were always an option.
Thus began a pretty close relationship with my naturopath. I am incredibly lucky that we have a naturopath in the next town over who has dealt with Lyme herself. She’s been a wonderful partner in this journey and has done a great job of educating someone who is used to conventional medical treatments.
From the get-go, her top priority has not been to kill the Lyme (as you might assume it would be), but instead to bolster my body’s own immune response and have it kill the Lyme (and maybe give it a little help eventually). This is actually right in line with the general plan my LLMD had in mind—get my body in the best shape possible, and then turn the focus toward killing whatever pathogens are still around.
So, the past six months have been almost entirely about getting my body right. This has meant a lot of lifestyle changes. If you thought I was a crunchy granola, kale-eating health nut before, you ain’t seen nothing yet. The major lifestyle changes I’ve made:
Go on a very limited therapeutic diet. More about SCD here, but it’s a very limited diet based on paleo principles to help heal the body. Basically, I eat vegetables, fruit, nuts, seeds, eggs, and meat—and that’s it. No cheats. No flexibility. No treats. I eat 9-12 cups of vegetables per day, no added sugar other than small amounts of honey, no alcohol, no dairy, no grains, no legumes. You’d think it’d be hard, and sometimes it is, but I more or less now view my meals as medicine, so that makes it easier. If this is what I have to do to feel well again, it’s worth it.
Reduce stress as much as possible. This has been a hard one for me, because so much of the stress in my life is eustress—or positive stress—but it still taxes the body. I love my job. I love chasing my kid around the yard. I love shoveling loads of compost. But all of those things tax my body in its current state. My naturopath “prescribed” me no more than six hours of work per day, and I’ve found that I actually feel much better if I stick to around four. I take a nap everyday. I meditate multiple times a day. I say “no” to a lot of things I’d agree to before Lyme. I don’t push myself physically, even when I want to.
Protect my sleep at all costs. Pre-Lyme we were still co-sleeping (gosh, this feels like a lifetime ago), and as much as I loved spending nights snuggled up to my little girl, I just wasn’t getting good sleep. My naturopath also “prescribed” a renewed investment in my own sleep. Which meant moving Juni to her own bed, creating a positive sleep routine, and making sure I get 8-12 (!) hours of sleep per night—no exceptions.
Be more vigilant about toxins. This would have been something I rolled my eyes about pre-Lyme. I mean, I didn’t bathe in pesticide regularly, but I mostly felt like if I kept out toxic chemicals where I could and ate well, my body would do a good job processing out the rest. And it did, until it didn’t anymore. Now I have to be incredibly vigilant about what toxins I come in contact with. A trip to get my hair dyed landed me in bed for two weeks. Putting on conventional sunscreen made me so sick I almost fainted. I took one Excedrin (ONE) and it felt like my heart was going to explode out of my chest (my body and caffeine no longer mix). My body just doesn’t have the energy or ability to process out toxins anymore. This means I filter my water, I purify my air, I have to be incredibly vigilant about the soaps and shampoos I use, and I eat all organic. I can pretty quickly feel the difference in my body when I don’t.
Basically, my body is in a place now where I’m on the razor’s edge between illness and health, and anything can tip me over into illness again. It can be a bad night’s sleep. It can be a cup of coffee. It can be someone wearing too much perfume. My margin of error is basically nonexistent. It’s, honestly, exhausting. And makes me feel pretentious and high maintenance when I tell someone I can’t eat the cookies they made for me, which isn’t fun. But feeling sick is even less fun. So I keep on keepin’ on.
I’m also on a regime of herbs, vitamins, and homeopathic remedies to help deal with my specific symptoms and help boost my immune system. We’re still basically in “phase one” of my Lyme treatment—bolstering my body while treating my lingering symptoms. Phase two comes when my body is in good enough shape to handle strong herbal (or pharmaceutical, if we decide to go that route) antibiotics to actually kill off the bacteria.
We actually tried to move to phase two a few months ago, and I almost immediately got so sick I could barely lift my head—my body just wasn’t ready for it—so we pulled back and are back to working on healing the “terrain” of my body before attempting the strong herbal antibiotics again.
Some days, I feel perfectly healthy. Maybe a little fatigued in the afternoons, but I almost feel like myself. And then other days, I don’t. I get bad stretches where I can just feel my body isn’t functioning the way it wants to. My main lingering symptoms are:
Fatigue. Oh my, the fatigue. This is the major issue I deal with, and it sounds so innocuous when you say it, but the word “fatigue” doesn’t even touch how tired I am sometimes. This isn’t just sleepiness. This isn’t just tiredness. It’s like I hit a wall around 1pm every day where my body literally can’t function anymore. My cognitive function goes out the window. I can’t speak properly. My muscles start to ache. I have a hard time even keeping my head up. It surprises me when it happens almost every day, because 30 minutes before I hit the wall—I feel normal. It’s like my body pulls a “NOPE. NO MORE” lever, and I shut down. I usually rest for 2-3 hours in bed every afternoon, and I seem to be able to then get through the evening.
Joint pain. Joint pain is a classic Lyme symptom because the Lyme bacteria likes to feed on the collagen in our joints—which turns into stiffness, achiness, and pain in your joints. My problem joints are my knees, hips, and especially my rib cage. My ribs just ache all the time.
Dizziness. This is something I’ve dealt with pretty consistently with my Lyme infection—I get so dizzy and so lightheaded sometimes that I’ve actually fainted a time or two (mostly after getting overheated—more on that in a second). This is a really scary symptom because it means that I don’t always feel comfortable driving or being alone for fear of fainting.
Heat intolerance. I’ve never been very tolerant of heat (I’m an A/C lover), but it’s become a medical issue for me in the past few months. I can’t take hot showers, I can’t work out in the garden in the sun, I can’t get in a sauna or a hot tub. My body just seems to shut down. My arms and legs go numb, my vision goes dark, my heart races, I faint. It’s been a real annoying (and scary) issue. My naturopath is working a theory that this is actually due to adrenal fatigue and not Lyme disease itself, and is planning on starting me on a few new herbs to see if we can level it out. If not, a 90° Indiana summer is not going to be fun!
What you’ll notice is missing from the list? Any cardiovascular issues! About a month ago, I was given the all-clear from my cardiologist after an echocardiogram showed my heart muscle has completely healed from the damage that my early Lyme infection caused. I have normal heart function for a 34-year-old woman (which absolutely wasn’t the case six months ago).
My cardiac symptoms (heart palpitations, fluttering, rapid heartbeat) have all gone away, too. This is great news, obviously, because a healthy heart is a good thing, but also because Lyme carditis is one of the few ways in which Lyme can actually be fatal. It was a big source of anxiety for me worrying about the state of my heart, so getting the all clear is good for my physical and mental health!
Two weeks ago, I achieved a huge milestone in my recovery—I traveled solo for the first time since I got sick! As you may recall, I first got really sick when I was on the road, so the idea of traveling has been a source of a lot of anxiety for me. Both from an emotional standpoint—my therapist is working me through the trauma of the events of last summer—and also just from a sheer logistical standpoint. I’m not as healthy as I used to be. I can’t trust my body in the same way. And that’s scary all the time, but most definitely when you’re far away from home without your support system.
But I did a 48-hour trip for work, complete with plane trips and Über rides and late night dinners, and everything went as well as could be expected. I didn’t feel great (I dealt with a lot of dizziness and lightheadedness), but I made it through. I listened to my body and tried to respond with as much compassion as I could. Interestingly enough, all the anxiety I had about traveling was gone almost as soon as I stepped on the plane. It’s almost like I just needed to get back on the horse.
I also think I did a pretty decent job of not being “the sick girl.” Most people I was with on the trip didn’t even realize I was sick until they popped on my Instagram account and started reading—and then came back and asked me about it later. I never hide my illness—that isn’t good for anyone. But I also don’t want it to be my identity, and I feel good about the balance I found during this trip.
Overall, I’m healing. The path to health hasn’t always been straight (or easy), but I’m getting there. I feel good about the path my healthcare professionals and I have chosen (and the Plan B, C, D, etc. we have waiting in the wings if something changes). We are actually going to be starting a new protocol (changing my diet, herbal treatments, and supplements) in the next few weeks, so I’ll keep you posted on how that goes!
Next up for me is to eventually start a Lyme-specific treatment protocol, probably using herbal antibiotics. My focus when that starts will be on supporting my natural detoxification systems—getting those dead bacteria out of my body as quickly as possible to help avoid a die-off reaction. Then eventually, I hope to be completely in remission and get back to my friggin’ life!
As always, when I speak about my personal journey with Lyme, please try to remember that I am under the care of a small army of very qualified health care professionals who have my best interest at heart. I know you want to help, and gosh, do I ever appreciate that sentiment, but please try to refrain from offering me medical advice over the internet. For my mental health, I am choosing to believe that my care is in good hands—and I appreciate your support in that! ?
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where can I find that pad thai recipe?
We’ll be posting that recipe later this summer!
I think it’s incredibly brave that you’re sharing this journey with us, because we all know there are those people out there who, no matter what you post/say/do will judge you, and judge you harshly. I’m glad that you have chosen to share it with us though, because I think it’s eye-opening to not only see how to deal with Lyme, but also to see that it’s a very real thing and that it can happen to anyone.
So, thank you for opening up and for sharing your life, the good and the bad. I love seeing these updates, and seeing the different ways you’re working towards beating this.
Thank you for gently reminding people that you are in good hands and don’t need their advice, but simply their support. I might “steal” your last paragraph (while giving you credit for it!) when I share my own health information with people.
Wishing you the best on your continued journey!
Congratulations on finding the path that works for and makes sense to you! LOVE the concept that meals are your medicine. (How do we find the recipe for that beautiful dish you posted with this update?)
So very glad you got the answer to the question, What is wrong with my health? That’s a hard journey. You’ve eloquently described setting new goals for your Now, your future, and healing yourself from the mental, emotional and physical traumas of this disease. Best wishes, Cassie!
That recipe will be coming later this summer!
I hear you with not wanting to be “pretentious and high maintenance” when you talk about your diet and health. I feel the exact same way when I have to tell someone, “I can’t eat that”. It’s embarrassing but I have good reasons for being that way!
I too suffer from lime disease. One thing that has been very helpful to me is drinking Chaga tea. In fact I find, that when I do not drink the chaga tea I have a much harder time functioning.
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