Brie V. from Oklahoma
Do you remember being bitten by a tick? If so, do you recall where?
Yes! I was bitten at age 10 at a YMCA summer camp. They had an activity sheet that was used for signing up for activities, and I picked “creek hike.” I was assuming this would be a hike to a creek, where maybe we would get in and swim, and then hike back. Boy was I wrong. We hiked THROUGH the creek, with water up to our necks, no life jackets, no non-slip shoes. We were constantly slipping on mossy rocks and falling underwater, which was infested with all sorts of little creatures. I came back that evening with several ticks on my scalp.
How long did it take you to get a diagnosis?
15 years. I was diagnosed with acute Lyme Disease at age 10 after my tick bites and was treated with the typical 2-week course of antibiotics. As far as I knew, it was treated properly and the problem was gone. However, after that, I constantly struggled with my health on and off and saw tons of doctors searching for answers and never got any. It wasn’t until seeing Yolanda Hadid speak about her diagnosis on The Real Housewives of Beverly Hills that I even heard the term, Chronic Lyme Disease. After the past 2 years of my health rapidly declining and going EVERYWHERE for answers and still not having any, I was desperate and took things into my own hands. I did a ton of research and came across Chronic Lyme Disease again, only to find that all of my symptoms matched up! So, I believed this must be my answer, found a specialist, and got tested!
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes, TONS! Throughout my 15 years of health issues, if I had to guess, I’d say I’ve probably seen around 75 doctors. I’ve seen primary care physicians, internists, neurologists, cardiologists, endocrinologists, gastroenterologists, rheumatologists, hematologist/oncologists, allergist/immunologists, sleep specialists, urologists, emergency medicine physicians, surgeons, pediatricians, dermatologists, gynecologists, physiologists, and ophthalmologists.
Anything else you would like to share about trying to find a diagnosis:
I’ve even been to Boston’s Children’s Hospital and Johns Hopkins (two very well-renowned hospitals) and STILL didn’t get any answers about my health from them. I was also denied to be seen by the Mayo Clinic (as well as many other specialists). Getting a proper diagnosis is so difficult because traditional doctors don’t think outside the box - they operate out of this small little toolbox and if you don’t fit within that, they tell you that they can’t help you rather than continuing to search further, do research, consult colleagues, etc. This leaves the burden of finding an answer on the patient, who is already SO overwhelmed with the symptoms they live with, and that is not how it should be. It’s really sad that I learned more about Chronic Lyme and how to get diagnosed from social media than I did from doctors and the medical community.
How long have you been treating Lyme for and what treatments have you tried?
I only recently got the diagnosis. My first Lyme doctor started me on low dose immunotherapy and doxycycline, which I was only on for a short time before stopping to have more testing done. I am currently in between doctors and will be seeing some new Lyme specialists to start treatment again soon!
List up to 5 of your biggest (past or current) symptoms:
My top 5 are debilitating fatigue, temperature regulation issues (either freezing cold with chills or dripping sweat with intensive hot flashes), brain fog/memory issues, chronic widespread pain, and extreme shortness of breath/air hunger.
What (if anything) has made the biggest difference for you so far?
I’ve barely even begun any treatment, so I can’t speak to treatments. But I will say that being on supplements and following a strict diet - mostly paleo, no sugar/gluten/dairy/soy/corn and very minimal grains - has made the most difference in helping me feel a little better!
What is the biggest way that Lyme has affected your life?
It’s affected my life in every way... I had to quit my first nursing job out of nursing school because of my health, and have recently had to quit another nursing job because of it. It’s taken away the ability to do even the simplest of tasks - getting out of bed, showering, doing the dishes, going to the grocery store - I am unable to live the life of a normal 25-year-old. It’s really robbed me of my career, independence, my sense of normalcy, and fun experiences. I see all my friends and other people my age living their lives and I feel like mine is just passing me by - that part has definitely been the hardest
What do you wish people knew about Lyme Disease?
I wish people understood how serious and debilitating it is. I’ve received judgement from so many people throughout the years for sleeping too much, being too tired to do something, or them not believing the pain I experience, or thinking I’m just lazy. I would love to live in a world where others more often put themselves in someone else’s shoes to empathize with what they could be going through, because we are all battling something!
I also wish the entire medical community (all doctors, the CDC, insurance companies) would recognize that Chronic Lyme IS real and it’s destroying lives! Rather than fighting people who are already down, let’s come together and create a solution - develop reliable testing, establish more funding, and find a cure!!!
Any advice for someone newly diagnosed with Lyme?
Join all the Facebook support groups and follow as many Lyme Disease/chronic illness accounts as you can find! This has been instrumental for me in not only learning from other people’s experiences, but also not feeling alone! Also do lots of research, because you are your own best advocate!!
Fun fact time! What is something unique about you?
I can pick up almost anything with my toes, and I’m obsessed with interior decorating!
For more on Brie's journey, you can follow her at @brieviles on Instagram!