• Lyme Disease Stories

Christine P. from New York

Updated: May 3, 2020

How long do you believe you have had Lyme?

Your guess is as good as mine.

How long did it take you to get a diagnosis?

2 years.

Did you see multiple doctors before you were diagnosed with Lyme? If so, what types?

Yes. A rheumatologist, endocrinologist, hematologist, gastroenterologist, orthopedic doctor, neurologist, primary care, OBGYN, and an oncologist.

Anything else you would like to share about trying to find a diagnosis?

Make sure you check your labs and don’t let the doctor tell you that your Lyme test was negative if they aren't Lyme-literate. After my diagnosis, I went back and looked at all my labs - and I found some reoccurring bands that indicate Lyme, but it was not enough for the CDC/doctors to say it was a positive test.

How long have you been treating Lyme for?

1 year.

Do you have any coinfections?

Yes - Babesia and Bartonella.

What types of treatments have you tried?

Antibiotics (oral and intravenous through a PICC line), nutritional supplements, and a few herbal remedies.

List up to 5 of your biggest (past or current) symptoms:

Joint and muscle pain, 24/7 fatigue/exhaustion, migraines, sweating/hot flashes, light and sound sensitivity.

What is the biggest way that Lyme has affected your life?

I had to drop out of my Master’s program, lost all my friends, went into extreme debt - and I feel that there is no “living” anymore - (I can’t go out and enjoy anything).

What is one thing you wish people knew about Lyme Disease?

I wish people knew the severity of it...Like when someone says, "I have cancer," there's an automatic “oh my god” feeling attached to it. That same sympathy and understanding isn’t applied to the word, "Lyme" – and it needs to be because we are going through a living hell, just like those with cancer.

Any advice for someone newly diagnosed with Lyme?

Healing is a (very, very long) marathon - not a sprint. Don’t get discouraged when you don’t see results.

Fun fact time! What is your favorite thing to do in your free time?

Walk my Pitbulls!

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