Medical journalist Alison Palkhivala discusses the chronic Lyme movement in view of her personal experiences:
The chronic Lyme brigade do a lot of damage.
They’ve done an especially good job (better than anti-vaxxers) of appearing legitimate online because they have started a bunch of professional sounding organizations and use very sciency-sounding laboratory testing. Very slick.
My daughter has fibromyalgia and I must have been advised by 25 people over the years to investigate chronic Lyme. It’s really permeated the public consciousness.
Thank God I’m a medical writer and was able to separate reliable from unreliable sources because it is not easy in this case. A lot of smart people get taken in. And the “treatment” is not only expensive but potentially toxic and even lethal. Horrible.
If my daughter were more outdoorsy and likely to have come into contact with ticks, who knows? I might have fallen down the rabbit hole too.
The “Lyme literate” doctors make it sound like Lyme causes every problem. People online sing the praises of the LLMDs and claim only they understand Lyme. They foster a false narrative that only the LLMDs can solve your problems and mainstream doctors want to keep you sick.
It’s a complicated issue. Stigma definitely plays a role, but as a person with chronic illness and a mom of a kid with a chronic illness, I can see why people get caught up in this.
I maintain that the attitudes and behaviors of a lot of people in mainstream medicine are a huge contributor to the rise of pseudoscience, including anti-vaxxers.
Some doctors treat people with chronic illness really badly. My daughter and I have had some bad experiences. And the “alternative” health community is so warm and supportive. It’s no wonder that people get wrapped up in it.