Maria O. from North Carolina
Updated: May 3
How long do you believe you have had Lyme?
How long did it take you to get a diagnosis?
Over 3 years.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
Yes. A general practitioner, gastroenterologists, allergist/immunologists, rheumatologists, an acupuncturist, chiropractors, an infectious disease specialist, and probably more that I’m forgetting.
Anything else you would like to share about trying to find a diagnosis?
Trust your instincts. Some doctors will dismiss your concerns because they aren’t educated in Lyme. If a doctor isn’t hearing you, or is taking advantage of you and draining your resources with zero results, then move on. Go through the tests you need to get and make your way to a doctor that can help.
How long have you been treating Lyme for?
My situation got very complicated because, in the time I went undiagnosed, I became allergic to almost every food and drug out there so it is very difficult to treat without putting my life at risk. We are trying to figure treatments that will help my body to become less reactive so we can then treat the Lyme directly.
Do you have any coinfections?
Not that I know of.
List up to 5 of your biggest (past or current) symptoms:
Severe Multiple Chemical Sensitivity, allergies to almost all foods (I survive on an elemental formula), debilitating fatigue, cognitive difficulties (like memory loss, brain fog, and difficulty learning new things).
What is the biggest way that Lyme has affected your life?
Lyme destroyed my entire life as I knew it. I lost my career as a scientist, I lost my ability to eat (baking and cooking were passions of mine) and go hiking. I can very rarely spend time with family and friends because the chemical sensitivity makes it impossible to be around anyone using laundry fragrance, shampoos, soaps, lotions, deodorants, or anything with a chemical fragrance. I’ve lost a lot of my personality because I am in a brain fog and have headaches almost all the time. So, Lyme has caused much isolation.
What is one thing you wish people knew about Lyme Disease?
Join a support group. If you are too sick to make it to one in person, join one on Facebook. Ask people for information and help. Find a Lyme-literate physician. It’s difficult to get help from your typical doctor because they are not educated in Lyme. Sometimes they are downright hostile to you if you think you have it. There are people who can help though. Support yourself. No matter what or who you have to say “no” to in your life, reduce your stress as much as possible and do what you need to do to take care of yourself.
Any advice for someone newly diagnosed with Lyme?
If you get frustrated because you can’t get everything done and you feel you are wasting time by resting, try to change your perspective. Rest and healing is your job now. If you are resting or treating yourself, then you are doing what you need to do.
Fun fact time! What is your favorite thing to do in your free time?