Libby L. from Connecticut
How long do you believe you have had Lyme?
About 12 years - I was 100% a tom-boy growing up, so I was always outside in the woods.
How long did it take you to get a diagnosis?
About 5 years - I started getting migraines in middle school around the age of 10. Then, I began missing class after class because the headaches were so intense.
Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?
First we went to my pediatric doctor, who told me I was beginning puberty - he said sometimes people get growing pains, headaches, and can become fatigued. Then they sent me to the eye doctor because I have poor vision in only one eye and they thought the difference in light could be causing the migraines. We tried glasses and contacts, neither of which helped my migraines. Then, in the beginning of high school, around age 13, I went to a neurologist who told me I might have rhematoid arthritis.
Anything else you would like to share about trying to find a diagnosis?
I was very lucky to be friends with a family whose son had chronic Lyme, and when we told her about how we were bouncing from doctor to doctor trying to find out what was wrong she referred us to a Lyme doctor, who saved my life the first time. He diagnosed me with Lyme, Bartonella, Rocky Mountain Spotted Fever, Babesia, and Mycoplasma.
How long have you been treating Lyme for?
I was treated a total of 2 consecutive years with the Lyme doctor. I got back to school and went back to being a straight-A student. Until freshman year of college, I thought I had gotten Mononucleosis. I was so tired I would hardly shower, let alone go to class, and after about 3 months of it only getting worse, I figured I should go back to a Lyme doctor.
In comes a different Lyme doctor...After a solid 6 months of waiting for an appointment, I finally got to see this legend within the Lyme community. He was nice and very smart. He retested me for coinfections, as from earlier tests he could see I was wildly positive for Lyme. It came back that I have 2 subspecies of Bartonella Henselae, and Bartonella Quintana.
I was treated under that doctor for about 6 months, when I made the decision to pursue an integrative approach, along with IV antibiotic - That’s when I found a different Lyme doctor. He put me on at least 20 supplements a day, along with IV Bactrim and Rocephin through a PICC line. I am finally starting to feel a little better after 12 months of treatment.
Do you have any coinfections? If so, which ones?
Currently Bartonella Henselae and Bartonella Quintana.
In the past: Rocky Mountain Spotted Fever, Mycoplasma, Babesia
What types of treatments have you tried?
Oral antibiotics - 2+ years
IV antibiotics - 3+ months
Natural supplements - 6+ months
Medical Marijuana (saves me every day from throwing up)
List up to 5 of your biggest (past or current) symptoms:
Brain fog (4)
What is the biggest way that Lyme has affected your life?
During the second semester of my sophomore year of college, I had to drop out of school.
I also bought and trained my own horse at the age of 14, and I can no longer ride or even see him nearly as much as I would like to.
What do you wish people knew about Lyme Disease?
This may not be terminal, like cancer, but it takes your life away.
And that if you have Lyme, there is a good chance you also have a co-infection.
Any advice for someone newly diagnosed with Lyme?
GO TO A LYME LITERATE DOCTOR as soon as you’re diagnosed.
Fun fact time! What is your favorite thing to do when you’re not attending to your Lyme?
I love to go see my horse and groom him.
To find out more about Libby's journey, you may find her on Instagram @libbylaroche.