Looking back on the eighteen months I spent as Dr. X’s patient, much of it is hard to explain. Those who have been in my position—cripplingly sick for many years without a diagnosis or treatment—might understand. The irrational decisions made by those facing death we tend to forgive. Someone who is facing a lifetime of constant suffering, followed by death, may make decisions that are just as extreme, or just as compromised. There is nothing keeping her from the terrible abyss but hope of a cure, so she searches out one medical solution after another. She will never stop searching, and as the first choices fail she will look further and further afield simply to have hope.
By the time I reached Dr. X, I had been sick for five years; for the last four, standing on my feet was a colossal effort and I spent the vast majority of my time in bed, listening to books on tape. At the start I was twenty six years old, at the end I was thirty one, and I was living in my parents’ house.
The doctor immediately before Dr. X was Dr. Wu, a sixty-something Chinese acupuncturist who read the energy in my meridians with a computer program and a sensor that plugged into his laptop. He spoke little English, but enough to tell me “you don’t worry, I take care you,” as he put twenty or more needles in my body, then draped a sheet over all of them before leaving me to fall asleep for half an hour.
I would leave Dr. Wu’s office with a brown paper bag of dried seed pods, bark and twigs. I boiled these up in a special clay pot, three times for forty-five minutes each, each time pouring off half the brew and adding more water. The final product I kept in the fridge and drank several times a day.
Soon I saw some improvements—sitting up wasn’t quite so exhausting. I felt calmer, clearer-headed, perhaps a little stronger. Towards the end of the three months I tried walking very short distances, then even a few blocks at a very slow pace, and was happy to find that I was alright afterwards.
Then came the day I tried to walk the same short distance and found myself exhausted and aching in a way that was all too familiar for me. I went back to Dr. Wu and tried to explain the problem to him, but he seemed not to understand. There was something fundamental he was missing. If his English were better (or if I spoke Chinese) perhaps I could have explained it. I rested and hoped for a return of that little bit of lost energy, but as weeks passed my despair grew. The only way out I could imagine was death.
I remember crying uncontrollably at this time. I was unable to tell my mother how bleak things were in my mind. All I could say to her was, “I don’t know what I should do. There is nothing left for me to try. What would you do if you were in my position?”
“I would call Dr. P,” she said. “You haven’t been in touch with her for a long time, and she might have some suggestions.”
Dr. P was an extremely kind, slightly absentminded MD, one of the few medical doctors in DC with respect for alternative medicine.
Of all the doctors I had seen, Dr. P had produced the most lab work confirming there was, indeed, something biologically wrong with my body (low nutritional levels, high markers of toxic substances and adrenal function close to zero). She was still far from having a complete picture of what was wrong with me, and all her attempts to treat me had backfired, sending me into week-long relapses. This was no different than other practitioners I’d been to, but when I called her tell her things went wrong she didn’t blame me—and that was different, so I kept working with her. She earned my respect in the end by telling me honestly that she did not know herself what to do. Her first suggestion was for me to go to a doctor in Seattle, but I wasn’t ready to go so far from home, so she told me about alternative therapies in the city. Dr. Wu was the sixth practitioner I had tried since then.
When I called Dr. P that late spring of 2004, having given up all hope on a cure from Dr. Wu, we agreed I’d tried everything in Washington worth trying. She suggested again I go to Seattle. When I told my mother this, she surprised me by saying it was worth considering.
I, on the other hand, was skeptical. I had been to so many doctors, in Mexico where I had first gotten sick, and then here in Washington. I had been to John’s Hopkins University Medical Center. I’d been to doctors praised to high heaven by friends of friends whose symptoms were close to mine. A parade of Western doctors had run tests that turned up nothing. I had tried acupuncture, homeopathy and vitamins, acidophilus and biofeedback, cranial sacral therapy and Nambudripad’s Allergy Elimination Technique. I had even been to a specialist who had wanted to operate on my sinuses, although I had no problem with my sinuses.
And here was the thing: all the doctors I’d been to (with the exception of the sinus guy) offered plausible explanations for my illness. In the initial visit they diagnosed me so well I was sure I had found the answer to my problems at last. And each course of treatment ended much the same way: my body was pushed too far, without any means for recovering from Lyme disease, which was really what was wrong with me, although no one knew it. For all my money and effort, I wound up feeling worse, with my hopes torn to pieces.
After five years of that, why would I go to Seattle to see another doctor who probably didn’t know how to cure me either? Dr. P insisted that she would know how, but I remained doubtful.
A phone call was arranged. As a journalist, I had a list of questions for Dr. X. How many patients with symptoms like mine had she seen? How many patients had she seen who reacted to treatments in the opposite way than what she was expecting? (This was often the case for me.) What would she do if something she tried didn’t work?
For all my questions she had answers that convinced me she was willing to think creatively, if her effort failed she would not simply blame me for it, as most doctors did, but go back and reassess her own work. This was more than anyone had done for me so far.
On the other hand, as a journalist I knew this was her own version of events, and it was always worthwhile to get a different perspective. I asked if I could speak with her patients.
Her office sent me a list of seven patients who had agreed to speak with me. I called them all. Each had gotten nowhere with standard medical care but had made great progress with Dr. X. Some were at the end of their treatment, others had only been with her a few months. Each had at least one symptom that overlapped with mine, and all had good things to say about Dr. X.
One other thing I heard over and over: she is not a normal medical doctor, she will do some unusual things, but if you keep an open mind she will help you.
So it was that my mother and I boarded a plane to Seattle in June of 2004.
This story continued in the next post.
