Avery S. from Illinois
How long do you believe you have had Lyme?
I started having symptoms when I was 12. I believe that I have had Lyme Disease for 6 years.
How long did it take you to get a diagnosis?
Unfortunately, I was misdiagnosed for 6 years before the official diagnosis of late stage Lyme Disease.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes, it was really tricky to find one doctor to listen to me and look at all of my symptoms, so I went to many doctors before my Lyme Literate doctor. My original symptoms were joint pain so I went to several rheumatologists, along with a chiropractor, neurologist and a cardiologist.
Were you diagnosed with anything else before Lyme? If so, what?
I was first diagnosed with juvenile arthritis and when my symptoms didn’t improve, I was then diagnosed with Fibromyalgia and "Chronic Pain." Many doctors I said I was making it up and that it was depression.
Anything else you would like to share about trying to find a diagnosis:
Trying to get my answer was the hardest thing I have been through. People didn’t believe me and I was starting to not believe myself. I tried so hard to find the reason I was sick and on top of fighting with insurance companies and doctors - it became even more exhausting. It is hard to get a Lyme diagnosis because so many people aren’t aware of it and don’t know how unreliable the blood tests are. If there is more awareness, maybe people wouldn’t have to suffer in the silence anymore. Maybe people could get better quicker and maybe people would actually listen.
How long have you been treating Lyme for?
I have been in treatment for 15 months.
Do you have any coinfections? If so, which ones?
I do not have any coinfections but I do have CIRS (Chronic Inflammatory Response Syndrome) which is very common with people who have Lyme Disease. CIRS is where my body can’t get rid of toxins which makes the Lyme treatment even more tricky and difficult to go through like many coinfections.
What types of treatments have you you tried?
I have tried 5 different kinds of oral antibiotics, hundreds of supplements, along with paleo/gluten free diets, massage therapy, physical therapy, acupuncture, Lidocaine patches, along with many medications to keep my symptoms more manageable.
List up to 5 of your biggest (past or current) symptoms:
My major symptoms are joint/muscle pain, fainting, heart/chest pain, fatigue, and brain fog.
What is the biggest way that Lyme has affected your life?
Lyme Disease made it so I couldn’t have a “normal” teenage life. I am stuck in the hospital, doing makeup school work, counting pills, taking the elevator instead of stairs, cancelling plans due to feeling poorly - and instead of worrying about normal problems, I am worrying about getting a doctor to listen and hoping the next treatment protocol will work. There isn’t necessarily a “biggest” way Lyme changed my life because it is all completely different because I have Lyme. Because of Lyme, I am who I am today. I became a different person - someone who is more passionate and caring. I became a teacher, a better listener, and ultimately a fighter. I owe all of that to Lyme.
What do you wish people knew about Lyme Disease?
I wish people knew that Lyme Disease is real. I wish people knew that people who have Lyme Disease just want to get better. They aren’t drug addicts, lazy, or making it up. I wish people knew how many people can’t afford treatment because of the lack of knowledge and the fact that insurance companies don’t cover anything. I wish that people knew and were more kind to people who have Lyme. I wish people knew that just because you can’t see it, that it is still there. I wish people knew that it is a long process to get your health back. I wish people knew that no matter how frustrating it is to reschedule plans, explain your symptoms, and take longer doing activities - it is even more frustrating to us who are suffering with Lyme. I wish people knew that we just want to get better and that we are fighting for it. I guess I just wish that people knew.
Any advice for someone newly diagnosed with Lyme?
Don’t ever give up. There are going to be bad days where you aren’t sure if you will ever get better but there will also be good days where you slowly see improvement. I would tell them to listen to yourself - that only you know how you feel and what your body can do. Listen and don’t be afraid to rest and take care of yourself. Also don’t forget to smile. :) Lyme Disease is a big part of your life but it will never be what defines you.
Fun fact time! What is your favorite thing to do in your free time?
I love being with my friends and family. I love participating in my school’s band and musical productions. I love reading and talking to everyone around me and I love teaching people and listening to others. I also love art and photography.