Kami L. from Oregon
How long do you believe you have had Lyme/tick-borne illness?
My first symptoms appeared as young as age 6 or 7. While I had various episodes throughout my schooling and college, I didn’t become disabled until I was 26.
How long did it take you to get a diagnosis?
As is the case with many other Lyme warriors, I went years and years without an accurate diagnosis. I felt like it was often a battle to be heard or believed by most doctors. After an alarming two-week spell in 2010, I began fighting more for answers. I was first diagnosed with Multiple Sclerosis in 2011 and at the time it felt so comforting to have a name to my abnormal reality.
But, as many of you other Lyme friends will guess, it wasn’t the end of my journey. After a few years of gradual shifts in my symptoms and then my health crashing suddenly in 2013 we began questioning whether there was something more happening in my system. If felt like we’d missed something. So in 2014 we saw a Lyme specialist who confirmed via lab results that I did, in fact, have chronic Lyme disease.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I did see a few, yes. Before my Lyme diagnosis I saw a variety of general practitioners, a vision specialist, and several neurologists.
How long have you been treating Lyme for?
I’ve been treating Lyme for nearly 3 years.
Do you have any coinfections? If so, which ones?
I have Bartonella, Babesia and potentially one or two others that we hope to test for.
What types of treatments have you tried?
My first Lyme specialist started me out with a combination of oral antibiotics and natural supplements. I’ve also traveled to a clinic in Idaho that had amazing results with many other Lyme patients, but unfortunately after two trips and even a revamp to the therapy I proved to be an outlier. My body simply did not tolerate that treatment protocol, which was devastating as I had put so much hope in that being a game changer for me.
My most recent treatment has been a tailored-to-me natural protocol and I simply love my current doctor! While any improvement has been slow and most of them minor, she’s the first doctor to help me get some sleep and keep my heart episodes at bay or to a minimum. (Which after a few ER and an ICU visit, we’re extremely grateful for!)
List up to 5 of your biggest (past or current) symptoms:
My most disabling symptoms have included migraines/constant head pain, chest pains, fatigue, dizziness, and insomnia.
What is the biggest way that Lyme has affected your life?
It can be hard to narrow this down, can’t it? Lyme - and any chronic illness - is like implanting an octopus of abnormalcy into your life. It touches everything within reach: relationships, job, physical abilities, cognition, diet, hormones, you name it. I would say one of the biggest ways Lyme’s affected me is in my character. It’s made me a stronger, more compassionate, and an overall more aware human being. And while you’ll never catch me feeling gratitude for the disease itself, I will be proud of the person I’ve been and become in spite of how much damage and pain it’s caused.
What do you wish people knew about Lyme Disease?
I wish I could take each reader by the hand and tell them how very important it is to protect yourself and your children from tick (and mosquito) bites. Because until our government will listen to the pleas of countless Lyme sufferers, a lack of change in the system leaves you fighting for more than relief. It leaves you fighting to simply be heard and properly treated if you ever contract this awful disease.
Any advice for someone newly diagnosed with Lyme?
If there’s one message I’d leave with you, it’s this: Lyme treatment is different for every single patient. Don’t feel like you’re locked into the first specialist or treatment you start with. And also, trust your gut. This is something I wished I would have accepted more early on, but your body’s design is to send you messages when something isn’t working for you. Just because a treatment worked wonders for someone else doesn’t mean it’s automatically for you and your body.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
I love to write and connect with others’ stories through reading, messaging and emailing. The chronically ill are some of the bravest, kindest people I know. I’m also obsessed with Friends so you’ll frequently find them playing in the background while I’m catching up on Instagram or working online.
To find out more about Kami's journey:
Visit Kami's website: http://livinggraceblog.com
On Instagram as @kamichristina
On Facebook at: http://www.facebook.com/kamilingren19.