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WSJ: The Lonely Odyssey of Chronic Illness

This one hits home for me.

WSJ: The Lonely Odyssey of Chronic Illness

2022-02-25. Emphasis added.

 ... in the fall and winter of 2012, I went to see more high-level physicians and specialists, many of whom didn’t accept insurance. Debt accrued on my credit cards. By then, I had nine doctors—a GP, an endocrinologist, a rheumatologist, a neurologist, a dermatologist, an OB-GYN, a sports medicine doctor who specialized in hip and knee injuries, a nutritionist and a reproductive endocrinologist, to help with trying to get pregnant. No one had any answers.

...

Then a doctor I saw tested me for Lyme disease. In all my years of seeing doctors, only one had mentioned the possibility of Lyme disease, and I never got fully tested since the possibility seemed remote to me. I never had a bulls-eye rash, and I thought that you couldn’t have Lyme without the rash. My new doctor explained that this was a mistake; in fact, she said, I had the classic symptoms of a tick-borne disease. Perhaps it was not a coincidence that I had first noticed my symptoms after my family spent time on the Connecticut shore, not far from Lyme, Conn. She wasn’t sure what to do for me, though: If I did have Lyme, I’d had it now for almost 15 years.

...I took antibiotics intermittently for eight months. By the spring of 2015, I felt like a person again, even if some of the fatigue and dizziness remained. Those symptoms were manageable compared with the terrifying loss of cognitive function that the Lyme had brought with it. Little webs of feeling that I’d ignored for years shivered in the breeze of my wide-open mind.

....

WIND: what a happy ending after all that suffering!

If doctors cannot figure it out based on their knowledge silo, it must be in your head, right? The incredible gross incompetence of not even testing for Lyme all those years... OMG.

I find myself wondering: how much longer, if ever? Three good weeks in January, and then a shitty February, same kind of better/worse pattern now for 20 months. The psychology of chronic fatigue is more of a challenge than any double century ever could be, because there is no finish and even the course is blinded. I tested negative for Lyme, having thought of that early.

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