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After 48 hours of taking the drug, we began to feel better. We were able to function during the busy holiday season. But a week after the medication ran out, the old symptoms returned with a vengeance. Over the phone, the expert agreed to give us 20 days of iodoquinol and doxycycline (an antibiotic). But two weeks after that course ran out, the old symptoms returned, along with some new ones.

In January, six months after onset, the infectious disease expert began a new round of testing and sent us to a gastrointestinal specialist, who thought we had an infectious disease. The infectious disease expert ignored this advice. In tears, I begged him for more antibiotics, and he gave us 14 more days of doxycycline. He began treating me like I was hysterical, telling me he thought we were suffering from a “psychosomatic couples thing,” implying that I was a lonely wife inventing symptoms to get more attention from a busy husband. He offered to refer me to a psychotherapist.

I flatly refused and began shopping for a new doctor.

At this point, we were crippled with waxing and waning combinations of exhaustion, brain fog, constipation, explosive diarrhea, head/neck/muscle aches, traveling nerve pain, twitches, blurry vision, light and sound sensitivity, loss of time/place/self, and the inability to read, write, or carry out the cognitive tasks required for daily living.

Simple things were hard for both of us. I couldn’t remember what the red, yellow, and green colors meant on traffic lights. My husband would get lost in our neighborhood and lose his sense of self and place. I would forget to turn off my car when I went into a store. I couldn’t fill out a check or read bedtime stories to my children. Every time we ate, we’d experience searing pain in our intestines. My husband continued to drag himself to work because we needed his medical insurance. I had to shut down my business, and we had to take out a second mortgage to make ends meet. We were desperate, and not daring to say it aloud, we were worried that we would soon be too sick to take care of our boys. 

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