Casey M. from North Carolina
Updated: May 3
How long do you believe you have had Lyme?
At least 20 years - possibly longer.
How long did it take you to get a diagnosis?
I asked to be tested - It was very quick.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Lots of doctors! General practitioners, a spine specialist, a myofascial therapist, a neurologist, a general surgeon and an orthopedic surgeon.
Anything else you would like to share about trying to find a diagnosis?
If you feel like no one is believing you, keep finding new doctors. Someone will believe you. Otherwise, find a Lyme-literate doctor. Most importantly, keep fighting and being your own best advocate.
How long have you been treating Lyme for?
Do you have any coinfections?
Yes - Bartonella, Epstein-Barr Virus, and Mycoplasma Pneumoniae.
What types of treatments have you tried?
Antibiotics, herbals, lots of types of detox, probiotics and diet changes.
List up to 5 of your biggest (past or current) symptoms:
Brain frog, sensory overload, nerve pain in calves & feet, headaches, fatigue.
What is the biggest way that Lyme has affected your life?
Other than the actual aspect of being sick, it has stolen my freedom. I can’t work, I can’t make plans, and I can’t enjoy all activities that I did before. I just never know how I will feel.
What is one thing you wish people knew about Lyme Disease?
I wish people understood how outdated CDC guidelines and protocols are - and that 10 days of Doxycycline won’t cure most patients.
Any advice for someone newly diagnosed with Lyme?
Once you start treating, it’s gonna get a whole lot worse before it begins to get better…but it WILL get better.
Fun fact time! What is your favorite thing to do in your free time?