I have Lyme Disease.
Seems simple from the outside looking in. But it's actually very complicated. To reach this diagnosis I saw a variety of specialists (all trying to figure out different symptoms), had endless tests, lots of blood draws, time in hospitals and doctors offices etc etc.
I debated sharing my diagnosis publicly because Lyme Disease is a very controversial thing in the medical field.
An invisible illness is tough for people to wrap their heads around. Because on the outside, you may look fine. Most people don't see the waves of up and downs you experience daily, weekly, monthly...
You can't point at your arm where you have a bruise and say "ouch I hurt myself, see the bruise?" There may not be any external evidence to prove that you aren't well.
I had a multitude of random symptoms that I swore had to be related. I always felt off, even when I was "on". I won't get into the long list of changing symptoms and challenges I was experiencing. I kept thinking to myself... how can one person have so many health issues. No one believed me.
Turns out my gut was right. Everything related back to Lyme Disease.
I spent years treating each individual symptom and seeing a specialist for everything under the sun. For example, when I started to get migraines, I saw a neurologist and migraine specialist. We tried every kind of migraine daily preventative medication until we found one that worked.
(For those of you interested in migraines... I now take flunarizine daily as a migraine preventative! It is a life saver!)
Lets start at the beginning:
In 2016 I had a scare where doctors thought I had a brain tumour. Two family members had brain tumours in the past and I was presenting that way. My right pupil was enlarged, I was throwing up, bad migraines, bad vertigo etc etc... Long story short, I wound up in the hospital very sick. Had a brain MRI. No brain tumour present!!!
So what was wrong?
I was referred to an eye specialist because everyone was baffled by my suddenly enlarged pupil. He flipped my eye lids inside out and noticed bumps all over the inside of the lids. He diagnosed me with Cat Scratch Fever instantly as he had seen it before (pardon the eye pun). Whhhhat?? I love cats. So how in the heck did I get Cat Scratch Fever? Doc said it could be because I pick up every cat I see and hug them. The story checks out. I do that!
He put me on a heavy dose of doxycycline. I was on and off doxycycline for months and months. Strong doses. I avoided the sun like it was the plague because doxycycline makes you super sensitive to the sun. But one day, I sat outside in the shade under an umbrella for 10 minutes. My entire body was in the shade except for... of course... the bottom of my feet, which I forgot about even though they are attached to my body. I burned the bottom of my feet horribly and couldn't walk!! Ouch!
I finally wound up back at a naturopathic medical clinic. I had seen the doctor there in the past and she was always very wonderful. But the traditional medical system makes you feel that naturopathic medicine is a hoax... So I was flopping back and forth on what I believed.
After doing some digging and going back through my extensive health history... we tested for Lyme disease in 2018. She explained that Cat Scratch Fever is a co-infection of Lyme disease. When my results came back positive I felt a mix of emotions. I was happy to finally have a diagnosis, but I was worried and scared.
I wish I had tested for Lyme disease prior to all those rounds of doxycycline because I can't imagine how high my bacteria counts would have been at that time! That is my one biggest regret! I wish I was educated about Lyme disease earlier! So that's why I want to share my story, incase you are in the same position I was in. Reading other peoples stories helps!
I never had the bulls eye rash. How long have I had Lyme disease? I have a long complicated health history. Maybe I have had this my whole life? Maybe it's been undiagnosed for so long that the symptoms just snow balled. Who knows! I have so many questions! Questions that I will never know the answer to!
Shortly after my diagnosis, I spoke to an infectious disease doctor who told me that Lyme disease doesn't exist. So I didn't know what to believe. I did heavy reading and research. The more I read, the more I was convinced. I read other peoples stories and realized my story was the same!
So... I started on my health journey! I tried cat's claw, Japanese knotweed, turmeric, doxycycline, probiotics, vitamins, tinctures of things I couldn't pronounce... just to name a few!
I finally tried ozone treatments!!!!
After my first ozone treatment... I literally felt like someone took a squeegee over my eyes. I could all of a sudden see clearer and wider. My vision was dramatically different. When I walked outside, the grass was more green and the sky was more blue. It was absolutely crazy. I was hesitant to believe in ozone as a treatment. But in that moment, I was a believer!
The second treatment had me even more of a believer. You know the feeling you get when your ears pop on an airplane? It's very hard to explain what I experienced... I had that type of airplane ear popping feeling, but louder, as if something had been clogging my ears and it all of a sudden shrivelled up and disappeared. Hard to explain so that you actually believe me! But it was a loud and long popping, cracking and shrivelling noise. Then... I could hear. I didn't realize I couldn't hear well until... I could hear well!
It was insane.
I did a ton of ozone treatments and had great results! I highly recommend it! I tried different variations of ozone to find what worked best for me! I did have die off symptoms from certain styles and no negative reactions to other styles.
My die off reactions were mostly skin related and as a result of ozone treatment specifically through my ears! I would get a dermatitis type rash on my face. It looked like very tiny clear pustules. Different than acne.
Somethings that people don't know about my Lyme Disease journey...
I had a ton of die off symptoms while I was on the HGTV show Property Brothers in 2018, as I tried a new type of ozone treatment. The makeup artist on set would help me cake on makeup to hide all my little face bumpys! She would tell me how beautiful I was despite me feeling terrible about myself! I was also SO skinny that none of my clothes fit! But the camera really does add 10 lbs. On TV I didn't look as sickly as I really was!
I had to explain to Jonathan, Drew and the crew what I was going through (hey that rhymed) because some days I felt like it was written all over my face... physically and metaphorically! We were met with support and understanding!
Then... I was playing the main stage at a major festival in Canada that summer! Several months prior I bought this super cute romper to wear for that show! But it was WAY too big on me. I was sad! My weight was yo yo'ing like crazy! My ribs and spine were sticking out. It was scary.
I forgot lyrics on stage because my memory was so bad. I was so embarrassed I ended up telling the audience what I was going through... not something I planned on doing. Again, I was met with so much support. In the autograph line after the show people hugged me and told me their health struggles or stories about their loved ones!
Around this same time, I had to almost re-learn how to play guitar. My hands weren't working the same as they did before. I felt I wasn't as coordinated and my brain couldn't keep up with what I knew I wanted to do. It felt like my hands and fingers were moving in slow motion. I couldn't will them to move the way they did before. Then as I tried to re learn the piano, I had to learn to be very patient with myself! I had to practice things over and over again to have my fingers remember how to play.
I was having terrible memory and coordination issues. Music is what I love to do and I was struggling through every song!
Now let's be positive...
Lyme Disease hasn't stopped me from moving forward and staying positive! Of course it's been hard, keeping the faith is a battle some days. But music really is a therapy and I'm so so thankful to have music to turn to! If you don't play an instrument that's okay... just listen to music! It will help tremendously in your healing journey!
Here are some things that helped me! You may know all of this already, but here's your daily reminder!
Heal your gut! Consider probiotics and look into if they may be right for you
Eat healthy! Reevaluate your diet!
Lots of water! Get a large water bottle and take it everywhere! I found that drinking water through a straw helped me drink more water in a day!
No sugar! In short, sugar feeds the bad bacteria in your body! And its bad for inflammation! So kiss it goodbye!
No/limited alcohol! Same issue as mentioned above with sugar! inflammation! I'm not a big drinker to begin with, so this wasn't that difficult for me personally. But for some people, this is a big change! Fast forward several years, I can now have a glass of wine with no issues! So there is hope if you are currently in the thick of things!
Exercise! Low impact exercise when you aren't feeling well are key! You can find lots of fun workouts on YouTube! I love exercise bands. They are low impact but add resistance. You can add more or less tension based on how you feel that day!
Get fresh air and sunshine!
Avoid negativity and stress! Easier said than done!
Set boundaries with people that are "not good" for you or not supportive in your health journey
Put yourself first, if you can!
Take vitamins and supplements
Look into probiotics as you try to heal your gut! Often times, healing is from the inside out!
Use hair treatments and hair masks! Leave in conditioner is amazing!
Use gentle skin care products. Avoid SLS as much as possible!
Something I really loved when I was in the thick of my health journey... Aloe Vera Juice!
Self care is important! Click here to check out a feature I did on self-care with an amazing specialist in the field! It will give you motivation and tips and tricks!
No disease, disability or challenge can define a person. I refuse to let my health struggles bring me down, defeat me or define me. Whatever it is you are going through, whatever your struggle is, whatever you are battling... choose to be a fighter, choose to be a warrior!!!!
“You never know how strong you are until being strong is the only choice you have!”
So let me leave you with this... Lyme Disease is real. It's no joke. Take precautions to prevent it and check yourself for ticks... like Brad Paisley would say!! And if you do get bit by a tick, early diagnosis is so so important!!
Thanks for your ongoing support in both music and life!
P.S. Click here to check out a podcast where I talk all about my health journey with Lyme Disease!