Lyme Awareness #2

When I was diagnosed with Lyme disease, I was thrust into a world that was far from the medical world I was used to—the one in which doctors listen to patients and generally have at least a marginal degree of respect for the patient’s symptoms. This new world seemed completely upside-down. Before long, I started to think I was in the twilight zone of some alternate reality.

In those early days, I read and researched and learned as much about Lyme as I could. I contacted friends who had fought this battle, and I met with a Lyme patient advocate. Through my research, I realized what I was up against. Lyme and its treatment are very controversial, and the mainstream medical community will wash its hands of you in a mere 28 days, saying they have done their job. The problem lies in the fact that many cases of Lyme do not respond to the 28-day cycle of antibiotics recommended and approved by the CDC.

Halfway through my 28 days, I knew I still had symptoms of Lyme. I was fairly certain that this relatively short course of antibiotics wouldn’t do the trick to cure my Lyme and whatever coinfections lurked, as yet undiagnosed, in my body. By the time I met with my doctor again, several days after my antibiotics were gone, I still had fatigue, brain-fog, and a host of other symptoms. I remember asking, “What do we do now?”

“We wait,” she responded. “Hopefully, you are fine. If not, you have what’s called post Lyme syndrome.”

I’m sorry, post Lyme syndrome? Are you kidding?

True story: if something doesn’t go away and it’s still present, it’s not post- anything. I immediately started my search for a Lyme literate practitioner. I booked her first available appointment—in five months! Luckily, I was able to get in on a cancellation after only two. At that point, my blood tests were still positive for active Lyme.

If you are struggling with this disease, you are not alone. Together, we will get through this. Through our struggles, we will improve the way Lyme is diagnosed and treated.

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[Image is a Lyme awareness bracelet from Bravelets. They will donate $10 from the sale of each bracelet to the cause of your choice.]

Lyme Awareness #1

I recently learned that May is Lyme Disease awareness month. Most likely, May was chosen because this is the month when nymph ticks are most active—from May to July. And because nymph ticks are so very tiny, they are extremely hard to detect….

I was feeling pretty good the day I was diagnosed with Lyme disease. I was tired, but I had been traveling with my daughter. Under the circumstances, that was normal fatigue, right? Then again, as a single mother, I am not sure I have any idea what “normal fatigue” is since I seldom get more than five or six hours of sleep at night. I scheduled a visit with the doctor because I had a strange rash—large blotches covered my torso and had begun to spread down my left arm.

I had first noticed the blotches in the hotel bathroom mirror.  The first day, I had a couple of spots. Strange, I thought, examining what appeared to be a welt with an odd grayish color at the center. I touched it. It didn’t itch, and there was no pain. Huh, I pulled on my pajama top, dismissing the spot from my mind, as if covering it up would make it go away.

The next morning, the spot had faded (though it hadn’t disappeared), and I dressed quickly to get to our morning commitment. We were attending an athletic competition that kept us busy and away from the hotel for the majority of the day. We also spent long hours sitting around—in stadium seats and on the floor of the field house.

Back at the hotel at the end of a long day, I stumbled into the bathroom, exhausted. As I lifted my shirt, I caught my reflection in the mirror. My heart skipped a beat. The two spots had multiplied, and now covered my torso in angry pink and grey blobs that wound across my side and on to my back. The sight was startling. I took a deep breath and tried to compose myself as I dressed. My brain was reeling while I consciously tried to calm myself enough to go back into the room without alerting my daughter to anything unusual. Funny how deep-rooted our mom instincts are.

It’s nothing, I told myself.  I probably picked up some nasty fungus or something from the field house floor or the hotel or….  I breathed slowly, deliberately. My thoughts were convincing enough that by the time I was ready for bed, my mind had moved on to other things.

The spots remained through the following day, Thursday, and when I finally arrived home on Friday, I was able to schedule an appointment with the doctor for that afternoon. By this point, I had convinced myself that it was something I had picked up from one of the many unclean surfaces I had come in contact with on my trip.

The doctor took one look and immediately said, “That’s Lyme.” I was shocked. But then again… Suddenly, all the other symptoms I had been experiencing over the previous months came together. A series of odd, unexplained viruses? Not at all. One diagnosis and everything made sense.

I consider myself lucky that I had that rash. I was lucky that I didn’t brush it off as nothing and wait for it to go away on its own. I very well may have contracted Lyme in my house from a tick that hitched a ride on my cat. But I was lucky. I am lucky.

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