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5. setting up the treatment

January 22, 2011

The phone rang and I picked it up. It was the guy from NPR, I’ll call him “X.” He was friendly, warm, vulnerable, and he sounded completely sincere. He listened to my story and told me that, indeed, he had encountered plenty of folks with precisely my problem, and that they respond well to the worm. He told me about one guy who had become to reactive to things that he was reduced to eating only a synthetic powder. Now, a year after receiving the worm, he was eating normally.

“So, what’s the downside?” I asked.

X told me that it might not work. About 25% of folks are not helped by the therapy. Also, I might have a terrible reaction to the worm. He told me that I would experience a rash, itching, and might experience nausea, headaches, and a frightful litany of other, scarier reactions. But, he told me, while the rash and itching are experienced by everyone, the worse reactions are exceedingly rare. A certain subset of middle-aged women, mostly with fibromyalgia, have the worst time of it. Many of them are still helped by the treatment, but the introduction of the worm is a difficult time for them.


He also said that they found that people who are taking 20mg. of prednisone experience no itching or rash, and actually have a hard time believing that they have been infected. I decided that was the way to go.

He told me the cost–$3,000. Not cheap, but the price wasn’t for a dose of worm, it was for 5 years of treatment. That means as many doses as it takes, constant monitoring of worm level, constant access to experts for questions and problems, etc. Not bad, when you consider it might just work. $3,000 to not be in constant pain every day? That’s a bargain. $3,000 to be able to eat bread, drink a glass of wine, take an advil when I have a headache?

Count me in.

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