One Patient’s Journey Living with Lyme Disease

Lyme disease is complicated. Doctors don’t understand it well, and even experts admit that there is a lot they don’t know. However, I’m a physician and I’ve had the misfortune to learn the hard way about Lyme.

About the time you’d expect age to start creeping up on you, late forties, I had begun to be overwhelmed by symptoms that were seemingly without a cause. Fatigue, brain fog, pain all throughout my body including muscles and joints, rashes, chest pains, mood swings, and very scary chest palpitations. It was like a constant case of the flu I couldn’t shake. Little did I realize I was suffering from every single potential Lyme disease symptom.

I resigned from my demanding obstetrics job, but I couldn’t get disability because I had no diagnosis. I was simply miserable. I started work in a primary care practice because it wasn’t as demanding. Grateful as I was for the opportunity to continue working on my terms, I couldn’t work enough to make ends meet. I was, at that point, a doctor who couldn’t afford the medical care I needed. However, the hard road to getting myself healthy enabled me to learn a lot of things which I can share with you.

One thing I learned is that you can have the bacteria that causes Lyme in your body for a long time without ever realizing it. I did and I was trained to know this sort of thing. This is, in part, to the fact that the bacteria is transmitted by tiny, nymphal ticks. You may not ever even find the tick on your body. When your immune system is functioning well, you might not see any signs of disease but the bacteria remains inside of your body waiting for its opportunity.

It’s also important to keep in mind that the degree to which Lyme disease affects each person may vary drastically. That’s part of why it’s missed so often. The vast expanse of symptoms and the varying degrees with which each person experiences them throws off diagnosis. Testing is notoriously unreliable on its own.

The moral of the story is that you shouldn’t be afraid to advocate for yourself and your health. If you think something might be wrong, keep working to find a definitive diagnosis and advocate for treatments that work for you.

- Anonymous, 36, San Diego, CA