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Maybe It’s Lyme
What happens when illness becomes an identity?
Polly Murray, in the 1960s and ’70s, was a mother of four with an old house on several acres in Lyme, Connecticut. In the summer, her kids built forts in the woods; they ice-skated on frozen cow ponds in the winter. The Murrays had an idyllic life in the country. They also had enormous rashes, strange joint swellings, and recurrent fevers.
One son wound up in the infirmary at boarding school, unable to lift his leg. Another had to have the fluid drained from his knee. Murray was constantly taking herself or her husband or one of her kids to a doctor — but none of the doctors ever had answers, nor did they seem especially interested in finding any. So Murray took the search upon herself. In The Widening Circle, her 1996 memoir, she reproduces extracts from her diary (“Monday, July 28: Todd had a fever of 100 again for two days and a severe jaw ache; he said it hurt to open his mouth … The attack lasted for five days”). The record Murray gathered is a testament to both the relentlessness of the symptoms and her own relentlessness in tracking them. Her husband compares her to “the lonely hero of a Hitchcock movie”: isolated, embattled, and disbelieved.
Soon, though, Murray started to hear other stories like hers. Her area, it appeared, had a cluster of juvenile-rheumatoid-arthritis cases. She called the state’s health department and met with Dr. Allen Steere, a rheumatologist doing a fellowship at Yale. He pored over her pages of notes. On the car ride home, Murray wept with joy: Steere didn’t have any answers, but he had listened. He wanted to find out what was wrong. By 1976, the condition Murray had observed had become known as Lyme disease.
“Lyme disease was a disease born of advocacy,” Dr. Paul Auwaerter told me. Auwaerter, whose lab focuses on Lyme and other tick-borne diseases, is the clinical director of the Division of Infectious Diseases at Johns Hopkins University School of Medicine. Back in the ’70s, Murray and her fellow Connecticut mothers had to fight for attention. Their experience left behind a powerful legacy, Auwaerter said, a sense that perhaps “the medical establishment didn’t really listen initially or were trying to be dismissive.”
Decades after Polly Murray kept her diary of symptoms, the spirit of advocacy associated with Lyme disease endures. But while Murray’s efforts were ultimately vindicated by medical science, a new fight — for the recognition of something known as “chronic Lyme,” which can encompass a vast range of symptoms and need not be linked to any tick bite — has grown into a phenomenon often untethered from scientific method or peer review. The chronic-Lyme community has a new agenda, one that was visible at last fall’s Global Lyme Alliance Gala in New York, where supporters gathered at Cipriani heard a speech from Real Housewife of Beverly Hills Yolanda Hadid. (See link for article)
*This article appears in the July 22, 2019, issue of New York Magazine.
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**Comment**
As you can imagine, this article makes the case that chronic/persistent Lyme isn’t backed by science.
All I can say, is take a look at this, Molly: Peer-Reviewed Evidence of Persistence of Lyme:MSIDS copy
https://madisonarealymesupportgroup.com/2019/06/12/bb-microscopy-a-pictures-worth-1000-words-how-bb-evades-the-immune-system/ There is a video in this link showing Bb’s ability to get into and out of the blood stream & lymphatic system quickly demonstrating its ability to go anywhere in the body to colonize.
We desperately need this work done to shut the naysayers up: https://madisonarealymesupportgroup.com/2018/04/13/chronic-lyme-post-mortem-study-needed-to-end-the-lyme-wars/
Then there are the thousands upon thousands whose symptoms persist despite standard treatment. Are they all mad? I don’t think so, and it’s time “science” started listening.
Madison Area Lyme Support Group 