Casey M. from North Carolina

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I wish people understood how outdated CDC guidelines and protocols are - and that 10 days of Doxycycline won’t cure most patients.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