Kelsie L. from Ontario, Canada
How long do you believe you have had Lyme/tick-borne illness?
I have been living with Lyme for approximately 1.5 years.
How long did it take you to get a diagnosis?
It took me about 3 months to be officially diagnosed in the USA with Lyme disease.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I saw two doctors in Ontario that used our bloodwork system – which of course, came back negative. I finally saw a naturopath who introduced me to the USA bloodwork system, and that came back positive for Lyme disease.
Were you diagnosed with anything else before Lyme? If so, what?
Before Lyme disease – I was diagnosed at 18 with endometriosis and polycystic ovarian syndrome.
Anything else you would like to share about trying to find a diagnosis:
Trying to find a diagnosis in Ontario was brutal. They tested me for many other illnesses including: MS, ALS, Fibromyalgia, bi-polar disorder, psychosis.
How long have you been treating Lyme for?
I have been treating my Lyme for about a year and a half now.
Do you have any coinfections? If so, which ones?
Luckily, I have no known coinfections.
What types of treatments have you tried?
I have been on high dosage of Vitamin A. Intravenous antibiotics and oral antibiotics.
List up to 5 of your biggest (past or current) symptoms:
- Manic depression/anxiety disorder
- Stiff neck, shoulders
- Face breakouts/rash similar to those who have Lupus
- Chronic fatigue
- Muscle/joint/bone pain
What is the biggest way that Lyme has affected your life?
This is a difficult question – I almost didn’t answer it because it is such a hard thing to talk about. But, I want to share my full story. Lyme has affected my life in more ways than I ever imagined. When I was first diagnosed in April of 2015, my fiancé and I were scared at the outcome of this disease. We did not know how I would react, or if I would live long. We are no longer together and I do feel that my chronic illness had an effect on our relationship. I am only 26 years old, and some days I can’t even get out of bed, or go out with friends, go to the mall, go to work, etc.... It’s been a massive burden on me and my family. It has led to my depression and anxiety disorder that I am now working on. It is a daily battle that I have to get through. It has affected the relationships I attempt to develop with new people, and old ones who have chosen to leave because they couldn’t handle it.
What do you wish people knew about Lyme Disease?
I’ve recently had people come and go because they felt that I was being manipulative or lying about my illness. My longtime friends know the truth and know that I am actually sick. Please know that we are not lying. We are not trying to be manipulative, there are some days where we have to cancel plans or can’t leave our houses or move at all. Saying that you’re going to be there and then bailing makes it even worse on the person. Even if they are in fear and try to push you away, be strong and let them know that you are not leaving no matter how hard it gets. They need that support. If you meet someone who says they have Lyme disease, be kind. Ask questions, they will be glad to answer and do your research. Don’t just assume because they look good that day, that they are not sick. I have no problem putting on a face of makeup on my good days, and pretending. You have no idea what battle they are fighting inside or that their body is literally fighting against them.
I wish our government would recognize that there are far more people diagnosed with this illness than they think. They need to start listening to us. We are slowly dying and there are ways to help fight this – wake up! I would highly encourage anyone who does not know about this disease to start doing your research. This can happen to anyone – at any time. Doesn’t have to be out camping, or in the woods - ticks are literally all over now.
Any advice for someone newly diagnosed with Lyme?
If you have been newly diagnosed with Lyme – stay strong. Remember, that this disease does not depict who you are or who you are going to become. Don’t let this eat you. Find a reason to get up in the morning and fight like hell to keep the spark in you alive. You can win this – and you will. We all will.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
When I am not focusing on my Lyme – I am currently working on my book, writing poetry, reading, painting, song writing, piano, and singing. Music and the arts are a huge part of my life and a great coping mechanism. I also work full time and plan on going into a graduate program come January 2018.
You may find Kelsie on Instagram as @kelslinnea.