I've Had Lyme Disease For Over 20 Years: What I Wish More People Knew

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Eight months later, I tested positive for Lyme disease, but my doctor told me it was likely a false positive. At the time, there wasn’t a lot of information and knowledge about Lyme—especially where I lived in Southern California. 

For the next four years, I continued to go to doctors, seeking answers, because my bizarre symptoms didn’t end there. I began experiencing Bell’s Palsy (a condition that causes muscle weakness on one side of the face), nerve pain, chronic cough and sore throat, brain fog, and memory loss. Looking back, I was experiencing so many classic symptoms of Lyme, but I didn’t realize it at the time.

I also started having cardiac issues, specifically a bundle branch block, which messes with the heart’s electrical signals and makes it difficult to beat properly. What’s more, I had retina damage in my eyes. I was experiencing all of this while also raising a newborn baby. 

Doctors never dismissed my symptoms, but I was subjected to a wide range of tests—MRIs, CAT scans, and many more positive Lyme tests. Within that time, I was told I likely had lupus, issues with my adrenal glands, and even that I needed back surgery. But I knew in my gut that none of those conclusions pinpointed what I was going through. I kept hopping around to different doctors, and doing my own research. 

Back then, you really couldn’t find a Lyme doctor in California. Eventually, I reached out to a specialist in Boston, and I faxed him all my medical records. He told me I needed to seek care immediately, especially since the disease was impacting my heart, so he connected me with a doctor in Los Angeles who could help. This doctor definitively diagnosed me with Lyme disease.

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