Ashley B. from Colorado
How long do you believe you have had Lyme/tick-borne illness?
The best guess we can venture is that I've had Lyme disease for about 12 years now.
How long did it take you to get a diagnosis?
I went misdiagnosed for about nine years.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I had been to the emergency room countless times and usually told there was nothing wrong which would cause my parents to want to investigate no further. When they finally were convinced something more was wrong, I went to see a family doctor who sent me to a chiropractor, a psychiatrist, and another general practitioner. They all had different opinions and no real solutions.
Were you diagnosed with anything else before Lyme? If so, what?
I was diagnosed with MS, Fibromyalgia, Arthritis, Adrenal Fatigue, Tietze Syndrome, Asperger's Syndrome, depression, ADHD, and narcolepsy.
Anything else you would like to share about trying to find a diagnosis:
Looking back, the biggest frustration was not being heard. I was a kid. I was in pain, but eventually I had to just hide it because I knew no one would believe me anyway. I was told it was all in my head or that I was making stuff up. It was very confusing to grow up constantly having those feelings invalidated. Without an actual diagnosis or hope of getting better, it was hard to not believe what I was being told. There were plenty of times I was mad at myself for making up so much pain. I thought I was messed up in the head because I couldn't seem to make myself stop having these "destructive" thoughts and "making myself" ill.
How long have you been treating Lyme for?
I have been in treatment about four months now.
Do you have any coinfections? If so, which ones?
I have also Babesiosis and Bartonella.
What types of treatments have you tried?
I am currently treating with a holistic approach. It is the only treatment I've tried.
List up to 5 of your biggest (past or current) symptoms:
What is the biggest way that Lyme has affected your life?
On one hand, this disease has broken me down to nothing. On the other hand, it has made me into who I am today. I don't really remember my life before Lyme.
Having this disease has made me strong for sure.
It has made me independent. It has made me a realist. I believe, though, it has also taught me how to love. I've learned the importance of the small things in life. I've learned that every life has a story. Just because I can't see what's happening, doesn't mean it doesn't exist.
I know Lyme is not who I am, but it is a big part of me. It's something I've grown with and through. Without it, I know I would be a different person.
Lyme has without doubt affected every aspect of my life. Family, friends, school, athletics, free time, and anything else I could list has all been, in some way, touched by Lyme.
What do you wish people knew about Lyme Disease?
I wish doctors knew better than to dismiss a persons feelings and symptoms- especially a young child. I understand there are people that are not always honest about symptoms, but the amount of people I've heard of being turned away by doctors only to later discover Lyme is in such great number. It astounds me.
I wish the public was simply better educated and aware of the disease. The general knowledge doesn't really reach past the fact that it comes from a tick. I find myself avoiding at times even mentioning Lyme disease as a part of my life because I simply do not have the wherewithal to explain it in that moment.
I wish my friends knew how I really felt. They know it's there and are quite supportive at times. Sometimes it's just not convenient to have a friend with an invisible illness. I get it. It's just frustrating.
I can't turn it on and off.
When I'm the most sick, I don't need you to be my doctor or try to make anything better- I just want your presence. I just want to know you support me.
Any advice for someone newly diagnosed with Lyme?
Listen to your body. That can be so hard especially if you've been through years of misdiagnosis or have been told to just get over it. Well, now you don't have to. Listen to your body. Rest when you need it.
Find community. Whether it be online, through friends, or a support group, find people you can lean on. You are not alone and never have to be! Every person with Lyme has their own unique twist on the story. Get out there, find those stories, and create your own! Share with others and learn from them as well.
Lyme does not define us! Let it refine us! If you have it, let it make you better. Let it teach you to love further, care deeper, and live stronger!
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
I love snowboarding! I also love singing, writing, and playing music, writing speeches and poems, drawing, watching movies, and solving Rubik's cubes!
To find out more about Ashley's health journey:
I am on Instagram as @livinlyme. I use this account to spread awareness and share my story with Lyme disease.
My personal account is @ash_nerdstyle. Feel free to reach out! I love this online community and am always here to help!!