Mikayla V. from Rhode Island
How long do you believe you have had Lyme?
I found out that I have Lyme, as well as multiple co-infections, Candida, and Epstein-Barr, in May of 2013 from my childhood neurologist. I then went and saw my primary care physician, who treated me with the typical Doxycycline protocol over and over until August, when she referred me to my current Lyme-literate doctor. She officially diagnosed me with chronic Lyme, which she believed I had for at least 6 years prior. So, all in all, I have had Lyme for practically half of my life.
How long did it take you to get a diagnosis?
It took me 6 years to get diagnosed with Lyme. I had been seeing a neurologist and although we were very close, she was at the end of her rope as well. I was told I was depressed, or very anxious, and was treated for severe migraines - nothing made me feel any better. I knew my body and I knew something was wrong. She just couldn’t put her finger on what was wrong with me and had even gone as far to say, “I’m sorry, Mikayla. I think you are just too in-tuned with your body, you are very sensitive.”
I had always been a very active person. I attended a private catholic high school to play division one girls ice hockey, so all of my aches and pains were blamed on the game. Just as I was about to stop seeing her she checked me over once more and I told her how badly my elbow had been aching. I had a very high tolerance of pain yet I could hardly move my elbow and I knew it wasn’t from the game. Thanks to her thoroughness and my darn swollen elbow, the diagnosis of Lyme finally came about.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
I went from neurologist to neurologist for many years until I finally stuck with the one that diagnosed me with Lyme. I also saw many therapists, both a psychologist and a physical therapist. I went to multiple primary care physicians, as they all just kept telling me I was crazy - I couldn’t stand to stick with them for long. I saw a doctor who claims he was, “head of the CDC.” What a joke he was - I went over all of my symptoms, showed him visible markings from the co-infection Bartonella, and even brought in my POSITIVE blood work and yet he blatantly ignored me and looked to my mom saying, “Your daughter is crazy and is doing this to herself, you must bring her to get a psychiatric evaluation!”
Anything else you would like to share about trying to find a diagnosis?
I always tell people that you know your body better than anyone else. Regardless of what others tell you, how they may make you feel, or anything else, TRUST YOURSELF. Listen to your body. Fight for your health and stand up to whomever you have to until you feel confident, safe, and like you’re in the right place. Never lose hope and never, EVER give up. You were given this life, this body, for a reason. You are never given more than you can handle. Fighting for a diagnosis is nothing less than brutal, I can promise you that. But it is worth it. I always wished that when I was searching for a diagnosis that I had someone who knew what I was going through, that I had someone I could talk to openly and would understand because they had been through the same thing. If I can be that person for someone else out there, this will be all worth it.
How long have you been treating Lyme for?
I have been undergoing treatment since May, 2013. I began with oral antibiotics, which I am still on, and eventually got a PICC line in 2014 - I have been doing daily IV antibiotics ever since. Now, I know many believe this is much too long but I have tried going off and I know that this is right for me, for now. I also have been doing Ozone therapy and it had literally been life saving. It has helped me feel alive again, like I am actually living my life instead of just trying to survive.
Do you have any coinfections? If so, which ones?
I do! Bartonella, Babesia, Chlamydia pneumonia…. Multiple viruses…. My mind is drawing a blank at the other co-infections!
What types of treatments have you tried?
I am currently on all of the following - Oral antibiotics, IV antibiotics, IV vitamins, daily IV fluids, Ozone therapy, and soon (fingers crossed) IVIG.
List up to 5 of your biggest (past or current) symptoms:
Neurological symptoms – memory is absolutely horrible (mostly short term), speech and word recall can also be very bad day to day, stuttering, sometimes I just go completely blank and nothing comes out
All over body pain – joints, muscles, bones
Blood pressure / heart problems
Nausea is HORRIBLE – my appetite will also come and go.
Migraines / dizziness
What is the biggest way that Lyme has affected your life?
Lyme has affected my life in more ways than one. It has completely turned my life upside down, shaken it up, and spilled it all over the place. But honestly, I wouldn’t change it for the world. I’ve learned to never sweat the small stuff, never take the littlest things for granted, be kind in every way possible even when people may not deserve it, and to simply love the life you’re given. My faith has definitely played a tremendous roll in this crazy journey. I believe we are all given the life we’re given for a reason and that there is nothing we can’t overcome.
Lyme has taught me to love myself. Although this is still a work in progress, I am learning that I am much stronger than I have ever given myself credit for. I am strong, compassionate, extremely caring and loving, and I deserve to be confident. Lyme is constantly teaching me new things every day. There is always a new obstacle but you must remember that you have survived 100% of the worst days you thought possible, and you chose to wake up knowing that today may not be the best but you WILL get through it.
What do you wish people knew about Lyme Disease?
I wish people knew how serious Lyme Disease can be. Before I was diagnosed, I had no knowledge of Lyme besides you get it when a tick bites you. Lyme Disease can completely destroy you and it requires you be the strongest person you will ever know. The world is desperate to know exactly what Lyme is because far too many don’t realize that it is a silent killer - no one may ever know about it unless those who are fighting for their lives bring light to this monster.
Any advice for someone newly diagnosed with Lyme?
If there’s one thing you do, reach out! I needed someone during that time and I would more than love to be that person for someone else. You WILL get through this. There is a strong community of fellow ‘Lymies’ out there and we are all more than willing to be your support system when you need it most!
Fun fact time! What do you like to do in your free time?
I love cooking, baking, doing anything and everything with my mom, babysitting, and taking care of others. Distraction is always key!
To find out more about Mikayla's journey, you may find her on Instagram as @intentionally_mikayla.