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My Lyme Disease Is In Remission. How Do I Keep It That Way?

0 3 years ago

The first time my doctor said the word “remission” for my late disseminated Lyme disease, I cheered. I’d been in treatment for Lyme and two of its co-infections, babesiosis and ehrlichiosis, for over a year. I’d been on a PICC line, I had experienced many Herxheimer reactions, and I had finally regained some energy. I was having more good days than bad, could exercise at physical therapy, and my brain fog had dissipated enough for me to be able to write a book. I was doing so well that my doctor decided to take me off of antibiotics entirely.

Less than three months later, I relapsed.

Not fully understanding what it meant to have a chronic illness—one that wasn’t entirely going away, even when it was in remission—I’d acted as if I was completely over Lyme. After living with family during my convalescence, I was ready to get back out on my own, so I moved to a different state and started a new job. This turned out to be too large of a leap. The stress of taking care of my own needs, working part-time and worrying about finances, and the lack of defense in my body created a perfect situation for dormant Lyme bacteria to start replicating and spreading once more.

It took another couple of years for me to get back to remission.Once there, I had to accept that late-stage Lyme is a relapsing illness. For some patients who are treated immediately, Lyme can be cured. But for many of us who were undiagnosed for years and battle persistent physical and neurological symptoms, we always run the risk of relapse. While we can’t necessarily control what spirochetes will do, we can control external factors in our lives that can help us stay healthy for long periods of time. With the exception of minor flare-ups, I have maintained remission for over a decade now. Here are some ways I’ve been able to do so:

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