Wednesday, October 22, 2008


For five years I longed for nothing more than I longed for a diagnosis. To be cripplingly sick and not know what is wrong with you is terrible. First of all, there is no means of getting better. Second, there is no simple way to tell others what is wrong with you.

The first, it goes without saying, was bad, but the second could at times feel worse. Without a specific name for my illness people tended to doubt I was sick at all.

It’s one thing to have to stop working, stop writing, ache all over and be so exhausted it was often practical to crawl to the bathroom instead of walking. It was even worse to have my father not understand I was really sick, to have my boyfriend wonder out loud if my problems were psychological, and have one of my oldest friends call me up to tell me my real problem was depression.

If I had to be incurably ill, couldn’t the universe at least give me the dignity of a name that would make people believe it?

Not having a diagnosis did not mean I stood in front of a group of doctors wearing white coats and scratching their heads as they told me “we’re sorry, we just don’t know what’s wrong with you.” Instead I heard explanations as varied as cytomegalovirus, food allergies, weak adrenal glands, chemical poisoning, mycoplasma and the fabulous catch-all, chronic fatigue syndrome.

Looking back, this was like the parable of the blind men touching the elephant. Each explanation was blind contact with a part of the elephant. No one saw the entire beast, which was, of course, Lyme disease.

With each new explanation I believed I had found the answer, and would be better soon. I learned, however, that the proof of a diagnosis is in the treatment that follows. I could believe all I wanted that food allergies were the root of my problems, but when treating them didn’t make the fatigue go away, and when the food allergies themselves came back soon after the treatment, I lost faith in that explanation.

Over five years I went through as string of such disappointments. Meanwhile my health slowly grew worse, I could walk shorter and shorter distances and went through greater downturns as treatments backfired.

In the end, we adjust our psyches to our realities. I grew to mistrust the seductive explanations about what was wrong with me. I would only believe the doctor who actually made me better. When I finally made it to Dr. X, I didn’t care too much about her diagnosis. I cared whether she could cure me.

Dr. X’s diagnosis was more like a list than a single diagnosis. It included most everything I’d heard before, and some I hadn’t. Lyme disease was thrown in there, but it was just one in a jumble of ailments, so I didn’t pay it too much attention.

For two years, I undertook a dizzying amount of treatment: orthodics, reiki, vitamins, supplements, lymph drainage massage, far infra red sauna and cranial sacral therapy. When I got the orthodics, my legs stopped aching when I stood up. When I started taking amino acid powder, I began to sleep better. When took medicine to kill off the colony of round worms in my intestines, my energy climbed another notch. Once I began heparin injections, I could walk again. The distances were still limited, but I no longer had to drive one block to the grocery store.

Meanwhile, I latched onto Lyme disease as the most succinct, recognizable label for my illness. I told everyone I met that I had Lyme disease. It was a relief to have people nod in instant understanding: I was truly sick, not crazy or lazy.

But in my heart I found the other explanations more credible. I had first gotten sick in Mexico, starting with a urinary tract infection that led to an endless array of antibiotics as the infection resisted the medicine. Meanwhile, I had picked up and treated one parasite after another. The low adrenal function explained my exhaustion, as for the food allergies and the sensitivity to chemicals, I could tell for myself I had those things.

I knew, vaguely, that treating Lyme disease involved massive doses of antibiotics. I had a huge fear of antibiotics since the antibiotics I had taken for a urinary tract infection in 1998 had set off all my health problems. I certainly didn’t want to take any more. Besides, that tick bite happened a full year after my health started to deteriorate, so I just saw it as the smallest, least important part of the whole picture.

(If this all sounds confusing, it is. To this day, I don’t fully understand the biological chain of events that got me where I am.)

To be continued...

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