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  • Lyme Disease Stories

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?


5 months.


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I wish people understood how outdated CDC guidelines and protocols are - and that 10 days of Doxycycline won’t cure most patients.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?


Read.

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