Interesting article about
a mother trying to find a diagnosis for her daughter and eventually treating her with antibiotics. It's on Longreads this week so is probably getting a lot of visibility. It shows how broken the medical system is when it comes to these types of infections.
"I had heard that antibiotics might help. The idea had come up during the NIMH screening. But in follow up emails, the researchers would not be pinned down about
which antibiotic might be best, how much, how often, how long—or even why they might work. When I asked for a paper or treatment guidelines to show my doctor, they lamely offered links to parent-led support groups. They could recommend no doctor in Ontario who could help. A Harvard pediatrician known to treat PANDAS, who I contacted through a colleague, left me a cryptic telephone message. “If she were mine,” he advised, “I’d give her a trial on antibiotics before taking her down for an IVIg trial.” When pressed, though, he too declined to hint what the treatment might consist of.
I could sense at the time that something strange was going on, but I couldn’t put my finger on what it was. A few doctors clearly believed that antibiotics could help us, and they were willing to whisper that in our ear, but they were not willing to write it down and sign their names to it."
hazlitt.net/longreads/journey-medical-netherworld?src=longreads