In this post I cover the very real but poorly understood “Chronic Lyme Disease” — which should really be called Post-Treatment Lyme Disease Syndrome. But before I start, there’s a clip from Fox News you have to watch, because it gives me hope for the future. I bring you: Fox Hires A Doctor To Tell People To Get Vaccinated. Now that your faith in humanity is restored, please enjoy today’s #SkepticalTuesdays post.
So I know this is a post about skepticism, and it’s also a post about disease, but this time I’ve made a resolution: today I’m not going to talk about the anti-vaccine movement, which means these stories are out of bounds. Today I’m going to talk about Lyme Disease.
It’s been in the news this week that a certain “reality” TV star, Yolanda Foster, has been afflicted by Lyme Disease for years. In a direct quote, People.com has her saying she’s “lost the ability to read and write.” But what’s not been made very clear — likely to both Foster and the readers of the article — is that she’s not suffering from Lyme Disease.
Now don’t get me wrong: I’m not denying that there is likely something very real and very wrong with Ms. Foster, and she has my deepest sympathies. But bad reporting is bad reporting, and it’s really worth saying this.
Lyme Disease is a disease caused by infection with one or more of a few different strains of bacteria, with the major vector being ticks. Most of the time, you get a so-called “bull’s-eye” rash (70-80% of the time) at the site of the bite, but sometimes it can stay “silent” and it’s not until much later in the disease that treatment is sought. Its symptoms can range from flu-like symptoms (in the earliest stages), to neurological symptoms like inflammation of the lining of the brain and concomitant issues (once the bacteria have spread globally), to motor impairment, sensory impairment, and chronic pain (if left untreated for months). These are all in the wikipedia article, and you can go read them yourself in more detail, if you’re not a hypochondriac (in which case stop reading this now, and go read about healthy people).
But there’s a treatment for Lyme Disease — antibiotics — and they are effective at ridding the body of the harmful bacteria. And Ms. Foster had that treatment. Technically, she no longer has Lyme Disease.
What she has is a rare syndrome that science hasn’t fully explained yet: Post-Treatment Lyme Disease Syndrome (or post-Lyme borreliosis syndrome). Scientific studies have shown that PTLDS sufferers have a specific set of symptoms — cognitive difficulties, fatigue, musculoskeletal pain — and that antibiotic therapy after the initial treatment shows no sign of actually helping. In fact, most people suffering from the syndrome have no evidence of continued infection. There are reported cases of prolonged antibiotic courses helping symptoms, but these are more likely due to the placebo effect, which this study finds to be “substantial.”
So when Ms. Foster writes that “The most frustrating thing is that there is medical data on Lyme and spirochete infections going back all the way to 1908, but yet we still don’t have proper diagnostic testing, a vaccine, or a cure for Lyme disease while we are living in the United States of America, the most extraordinary country in the world,” she’s really under-selling modern medicine.
We have a cure. We understand spirochete infections. We do have proper diagnostic testing for Lyme Disease, and a cure.
She has been cured of Lyme Disease.
But what we don’t understand is these lingering after-effects, which, from her descriptions, seem to be quite severe in her case.
This 2008 review suggests that PTLDS “seems to correlate with disseminated disease, a greater severity of illness at presentation, and delayed antibiotic therapy, but not with the duration of the initial
antibiotic therapy,” which suggests that the cause is the initial infection, rather than the treatment protocol. One possibility brought up by the review suggests that PTLDS may be a “postinfective fatigue syndrome” — a disease akin to the not-terribly-well-understood “chronic fatigue syndrome,” perhaps representing a chronic response by the immune system after the infection has been cured. But there just isn’t enough science yet to explain it, which is why people suffering from these symptoms often find themselves on the wrong side of science, turning to (as Ms. Foster called them) “every holistic protocol there is to offer”.
It’s cold comfort to sufferers, but there are things about the body we just don’t understand yet. There’s promising work right now on the human microbiome and on the immune system that may shed light on these things, but in the end it’s something we as skeptics need to remember: we don’t know everything.
And when the science isn’t there, it just isn’t there.