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Nine Doctors Missed My Diagnosis: Here’s How I Finally Found Relief

0 2 years ago

January 29, 2022 — 11:03 AM

by: mbg contributing writer Kris Newby

While some health issues are visible to the outside world, many people face chronic conditions that don’t have externally visible signs or symptoms—also known as invisible illnesses. In mindbodygreen’s new series, we’re giving individuals with invisible illnesses a platform to share their personal experiences. Our hope is their stories will shed light on these conditions and offer solidarity to others facing similar situations.

At the end of July 2002, my husband and two boys spent a relaxing week on the beaches of Martha’s Vineyard, an island off Boston. A few days after returning home, my husband and I came down with what felt like an intense summer flu. We had debilitating head and neck pain, fever and chills, body aches, and crushing fatigue. I had a circular pinprick rash around each knee, and I was so weak, I had to crawl on my hands and knees to get up to the second-floor bedroom. Both of us were in our early 40s, fit, and athletic, but we both agreed that this was the sickest we’d ever felt, so the next day we went to see a primary care physician together.

This physician looked us over and decided we had a viral infection that would go away in a few days. She ran a standard blood panel just to be sure. But four days later, things got worse. We went to see her again, and she told us our blood work was normal.

“Could we have Lyme disease?” I asked, knowing that ticks were a problem on Martha’s Vineyard. (Neither of us pulled out a tick.) She said she’d consult with the chief of infectious diseases and get back to us. He agreed to see us but didn’t think we had it.

This specialist couldn’t fit us into his busy schedule until December 5, more than five months after our beach vacation. And while we waited, our symptoms got worse. We started experiencing brain fog and gut pain with alternating diarrhea and constipation. Before this, we rarely got sick. Once every few years, we’d get a flu that would slow us down for a day or two. But this was very different.

We felt completely ignored and disregarded.

The infectious disease expert blew into the examination room and spent less than 15 minutes with us. He dismissed my Lyme theory, saying he thought we might have a parasite or parvovirus. He agreed to treat us for a presumed parasite with 20 days of iodoquinol (medication used to treat infections caused by protozoa, tiny one-celled animals).


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