I can’t remember the last time I saw Kaylie. We went to school together, so it was probably some time after we graduated from high school in 2007. Consequently, our class recently had its 10-year reunion. I couldn’t go because I have Lyme disease and ME/CFS, which makes it impossible for me to get around my house, let alone travel. But I did catch glimpses of the event on social media.
I’ll admit I was a little bummed not to be there, but at some point in my sullen mood, I realized that I wasn’t the only one missing out. Lots of people skipped the reunion. Kaylie was one of them.
Like me, Kaylie has Lyme disease. She has been finding her way through treatment for the disease, which I’ve been watching on her Instagram stories. This is where she regularly documents her battle with Lyme, as well as shares some amazing recipes from her website. The recipes follow Autoimmune Protocol (AIP), a viable way to reduce inflammation in the body through diet. Of her many recipes, I highly recommend the Almond-less Joys — a delectable combination of coconut and dark chocolate.
In reconnecting on social media, I became curious about Kaylie’s experiences with Lyme. So I thought I’d share some of the questions I asked her about living with the disease and chronic illness in general.
Kaylie had some really introspective responses to my questions. I would have liked to ask follow-up questions, but it’s hard to go back and forth online. That said, Kaylie will likely be reading this post, so please ask any follow-up questions you have in the comments section and hopefully she’ll respond.
Q1: When were you diagnosed with Lyme? What was that process like for you?
For years I always felt like something was off but I could never put my finger on what it was exactly. I was diagnosed with Lyme in the beginning of 2017. I first went to see a Naturopathic doctor in 2016 who was more concerned with my hormones and never really looked into the possibility of infections or Lyme. My symptoms never improved with this doctor and I felt like there was a lot more that needed to be uncovered. After spending about a year with this doctor (and a lot of money), I went searching for someone who would serve me better. I went to see a primary care doctor, a Chinese medicine doctor, an endocrinologist, and finally landed with a functional medicine doctor. With this doctor, I felt like I could finally breathe, like I was in the hands of someone who believed all of my symptoms and understood what was happening to me. I am now in the middle of treatment and my symptoms have begun to improve but I know I still have a long road ahead of me.
Q2: Do you remember any tick bites in your past?
I don’t remember any tick bites or the typical bullseye rash. However, I have found plenty of ticks crawling on me over the years. I’ve always been a very outdoorsy person; hiking and being in the mountains. My guess is that I was bit years ago but didn’t start showing symptoms until my immune system was compromised due to mold exposure, stress, gut issues and childhood trauma.
Q3: From what I remember, you were very active in high school — you ran cross country and always did well in PE. Now I see from your Instagram stories that you’ve been struggling with being less active as you battle chronic illness. How has living with a chronic illness affected your perception of both people struggling with illness and healthy people with boundless energy to exercise and enjoy life to the fullest?
Yes, I have been active my entire life. I played softball, basketball, soccer and ran track and cross country. In college, I turned to weight lifting and fell in love with it. After college I started doing Crossfit and did my fair share of obstacle races and 24 hour running races. I loved being active, it gave me confidence, helped me cope with many different stressful times in my life and really defined who I was. The day came where I couldn’t work out any more because my fatigue was so bad.
My perception has changed since becoming ill. I am a lot more understanding toward those who can’t exercise or do physical activities. Before, I would judge others who weren’t active and think that they were lazy. That is simply not true. I feel compassion for other people who are struggling with chronic illnesses and I understand the pain and loneliness that can come from it. In contrast, I feel envious of those people who have boundless energy, but I feel grateful that I know what that feels like. I have had energy before and I truly believe I will have it again. I have also come to realize that you can’t take movement for granted.
Q4: Do you consider yourself a person with a disability?
No. I don’t think I would ever consider myself a person with a disability. Maybe it’s pride or maybe, if I think that, then I would believe it and if I believe it, then I have accepted defeat by my illness. I am fortunate to still be able to live my life, even though it might not be how I want it to be. I realize that I can do simple everyday tasks and I am thankful for that. I do need to rely on my husband more than I ever have and even thought. I am someone who never likes to ask for help, I have become okay with voicing my need for extra support.
Q5: Before I got sick I had been in a doctor’s office a handful of times, maybe. Then when I became sick I underwent a tough learning curve. Eight years later, I’m still trying to wrap my head around all the medications and medical theories relating to my illness. Have you experienced any difficulties learning about Lyme and navigating a health care system that gives very little attention to it?
Oh man, it sure has been confusing and there is definitely a learning curve. Just like you, I never went to the doctor. I think I only went to get physicals to be able to play in school sports. I feel like I am a little different than other people when it comes to chronic Lyme and healthcare. I first learned that I had Lyme from my functional medicine doctor, the doctor that I see now. Also my functional medicine doctor is an infectious disease doctor, so that helps a lot. I have never once felt like my symptoms were dismissed or like Lyme wasn’t a real issue. I feel really fortunate because I have heard other people having a lot of issues when it comes to western medicine and Lyme. I truly believe in functional medicine because it treats the patients as a whole being instead of just treating symptoms of disease.
A few things before you go:
1. Thank you for reading! Please check out Kaylie’s website and follow her on Instagram for lots of great AIP recipes and products.
2. I am fundraising to pay my medical bills so if you’d like to help out by buying a shirt or hoodie I would be very grateful!
3. If you would like to donate to support this blog I would be equally grateful!
Really bad stuff, I’ve had great results with ozone therapy. Peace 💚
Oh good. Ozone is on my list to try some day. Thanks for reading!
After years of battling CFS/Fibro, after spending most of my life trying to get a diagnosis, I ended up disabled and felt so lost. I have an incredible disability psychiatrist that my Infectious Disease doctor referred me to and one day she said something that changed my life. I hadn’t realized that I was so depressed because I was angry that I wasn’t able to get back to baseline, let alone get healthy, and was judging my “failures”. She told me that I needed to mourn the person that I used to be, who was able to be active and never had the “foggy” brain. That person has essentially passed away. Out of that loss is a new person that may not have the same abilities, but has a lot more compassion, empathy, and a desire to help others with their journey. I’m sorry this is such a long comment, but this post made me think about that. I used to feel that if I admitted that I was disabled, then it had won, too. My incredible therapist helped me realize that being disabled is hard, but not giving up. It allows me to grow in ways I never would have without my life changing.
The question about disability is one that I think of often. I probably would have given the same answer as Kaylie before I became bedridden. But once you’re unable to take care of yourself it’s hard to deny that your disability. It’s obviously a very complicated question, perhaps one for a separate blog post. Thanks for reading and sharing your thoughts!
I think of it often, too (I have ME, but am mostly functional). I’ll set aside the part about disability and what our internalized fear of that label really says about our society and its values. I’ve had to work my way through the tendency to see illness as a fight or a contest of the will. It doesn’t help me. At the risk of arrogance, I already know that I’m plenty tough and that I’m doing what I can to respond to the illness. What’s been a lot harder to learn is the part about not being in control.
I agree, not being in control is often the hardest part. It is your body after all.
When I was younger, I imagined those reunions to be an event to look forward to. As high school and uni years passed, and those reunions started happening, I realized that I was not really interested in them at all. The people that I like a lot I communicate with and meet when possible. Maybe it’s the social media, through which we are able to see what is going on in people’s lives, that keeps me from having the need to talk to some people I knew back then.
Anyway, thanks for sharing her story and website. Some interesting recipes.
Quite strange that both of you have the same disease. I might be ignorant on the statistics, but what are the odds?
Good question about the odds. Definitely remarkable that we both got it, but crazy coincidences happen. I just listened to a podcast about a married couple — the woman was blind, then years later the man became blind too. Fascinating.
Indeed.
Actually the odds are quite good. The CDC is now guestimating that somewhere in the neighborhood of 300,000-400,000 people a year are infected with Lyme. I’m the second person in my extended family and something like the 6th person I personally know through networks other than the Lyme community to have Lyme disease.
I see. Thanks for the info.
Thanks for that info. That’s a lot of new cases. You’d think they’d do more research.
You sure would! I was just watching “Under Our Skin” with my mother who is here helping out and we are both outraged.
Ever try a ketogenic diet? I don’t have lyme, but most of my life I have suffered from constant fatigue and joint pain. Keto has mostly cleared it up.
Hi. Yes I’m pretty much Keto, though I do stray sometimes. I went on a carb binge and I had the worst pain and gut problems. Learned my lesson. If only it fixed all my health problems though.
Yeah that’s gotta be extremely frustrating.
Interesting. Thank you for sharing! Her positive outlook is commendable. I’ve been tested for lyme twice, once at neurologist and once at GP, neurologist test came back one positive, all other markers negative, so she said no, and GP test said no (no breakdown). Read recently somewhere that tests are only 50% accurate, so still I wonder… Growing up in No Cal, numerous tick bites, but no bull’s eye rashes. Wondering why if there are some tests that show it, and some that don’t…why aren’t we only using the fool-proof testing. Am I missing something? 🤔 Just thinking ‘aloud’. 🙂
Have you tried the Igenex and/or galaxy tests? I think those are the most useful, but still maybe not definitive. Very expensive too.
Thank you. I have not, but I’m going to look into them!
Hi, I’ve had an inflamed vagus nerve since 2011, my symptoms have been brain fog, fatigue, OCD and anxiety. I struggled for years to find out what the cause of this was as doctors didn’t have an answer. I tried so many different things and nothing worked, until I read something about the vagus nerve, I found that my symptoms were related to having an overactive/inflamed vagal nerve.
I didn’t know what could cause this, stress plays a part, I’ve always had OCD/anxiety and through long internet research I found that I was sensitive to MSG/glutamate which is responsible for damaging my vagus nerve.
I can only eat a few foods which is low in glutamate and only one meal a day. So I’m basically fasting for 22 hours and eat only cold food (hot food releases insulin and stimulates the vagus nerve).
I don’t mind eating like this, it’s just important i get better, it does make bodybuilding a little difficult as i can’t eat that much protein (only 70-80g) as glutamate is a major component of protein.
I’ve always been into weightlifting, when i was 18 i went from being 6’3 125 pounds to almost 200 pounds in 5 months through SS and GOMAD. But i fell ill shortly and lost all my gains and became rail thin, i lost all my strength, at my lightest i weighed 115 pounds.
Now I’m almost 100%, I’ve gotten up to 183 pounds and can perform 700 push ups, 500 hindu squats, 30 chin ups, although I have to be careful not to do much as it’ll stimulate my vagus nerve.
I’ve missed out on a lot in my life, i never got to go College so I missed out on all of the fun, instead I had to do my degree from home while suffering with these symptoms.
But I’m still grateful to be alive and to nearly be in a position of good health.