DIAGNOSIS, CONTINUED

Continued from the previous post

It is strange that out of the whole complexity of Dr. X’s diagnosis, the part I chose to dismiss was the very crux of my illness. Perhaps at a subconscious level I was protecting myself from the truth, because I certainly wasn’t ready to treat the Lyme with antibiotics. When standing up is difficult, it’s not the best time to bombard your body with killer pharmaceuticals.

As long as I was getting better, I had no reason to think any more about Lyme than necessary. My current treatment was working. I wasn’t all the way there yet, but progress would continue. Full health was just around the corner.

Ten months after I started heparin, full health was still around the corner. I had left Dr. X, and Carolyn Humphreys, my naturopath, sent me to see Dr. Martin Ross.

Dr. Ross gave me the gift I no longer knew I needed: a diagnosis.

If I’m going to continue with the parable of the blind men and the elephants, then Dr. Ross was—to put it plainly—not blind. He knew about elephants, and so could recognize the parts as pieces of the whole. Fatigue, insomnia, low adrenal function, compromised immune system, chemical sensitivity: it was all part of Lyme disease. The illness attacks every system in the body, and my symptoms, it turned out, where not a diverse array of “getting run down.” They were Lyme disease.

“The treatment,” Dr. Ross told me more than once, “takes two to three years.”

I called the Poet as I left my appointment, and ended up meeting him at the organic co-op across the street from his office. We walked through the aisles and then up and down on the sidewalk outside as I told him what Dr. Ross had said.

“Two years?” he asked.

“Or three, probably three since I’ve been sick for so long.”

We were both trying to get our heads around it. For the past year, my recovery was always a few good months away. Now that hope was gone.

Writing this a year and a half later, I can say that Dr. Ross’s diagnosis was the best thing that has happened to me in the past ten years. But at the time it felt like we were being robbed of a dream that had been almost within our reach.

Having the poet beside me was a comfort. We paced the sidewalk, talking about the treatment options Dr. Ross had described. Soon he turned to me: “I have to go back to work, sweetie, but this is a good thing. I think so.”

Gradually over the rest of the afternoon, it sunk in. I had Lyme disease. My complete recovery had never been just around the corner, even if Dr. X had told me that heparin and supplements were all I needed and that the end was in sight.

It explained so many things: the crippling illness, for starters, and why I had made so little progress after the initial change when I went on heparin. What was more, it felt good to know exactly what I was fighting.

Since 1999 my body had been a dark mystery. Even as I’d made progress with Dr. X, the illness had been framed as problems with my body: my adrenals, my immune system, my digestive system, all had strangely ceased to function as they should. And when I say my body, how can I separate that from myself? My existence had been weakness and suffering; it had felt alien and yet was inseparable from who I had become. Being able, for the first time, to picture the malevolent bacteria that had colonized my body changed that. The Lyme was the Lyme and my body was my body. They were occupying the same space, but were, at last, two separate entities.

Dr. Ross had told me that 90 percent of Lyme patients get better with the right treatment. As the Poet had told me outside the co-op: “of course you’re in that 90 percent. I don’t know anyone better at staying organized and taking all your medicine at the right time.”

I looked over the lab write-ups Dr. Ross had given me, and the prescription for an anti-fungal medicine, to start now, before I started Lyme medications. I also needed to make an appointment with Dr. Tara Nelson, who herself had recovered from Lyme, so I could get her advice about what course of treatment I should chose.

Keeping on top of doctors’ appointments and labs and medication for this illness is time consuming. I had long ago learned not to get discouraged by thinking of it all as a just job—a job I didn’t apply for, but was handed to me nonetheless. It was time to start taking care of business.