Lobbying to cure a disease that may not exist

Science and health reporting in newspapers is notoriously pathetic. Reporters with no real background or knowledge about the subject on which they're reporting are forced to puke out stories that more often that not are full of inaccuracies and misunderstandings.

So I don't hold it against the reporter behind this article that he was taken in, but let's see if we can add a bit more informed commentary to the topic.

That topic is "Chronic Lyme Disease."

Please note in advance that CLD is not the same thing as the well-established and reasonably well-understood diagnosis of Lyme disease. More about that later, but first let's look a bit at this S&E article, entitled "Lobbying Hard for Lyme Disease Sufferers."

It's an awful feeling to hear a doctor say there is nothing wrong with you, when you know something isn't right, according to Groton resident Donna Castle. But for many people who contract Lyme disease, that's exactly what can occur, said Castle, whose daughter has the disease.

"'It's all in your head' is a classic diagnosis given to Lyme disease patients," Castle said. "There is no 100 percent reliable blood test for the disease, and the symptoms can vary so much, which makes it very difficult to diagnose."

Pretty weird, huh? Doctors treat Lyme disease all the time. They don't say it's all in your head, because it's not. And while no test is "100 percent reliable", the current test is about 90% accurate. That's actually a very reliable test.

Also note at this point the way that doctors and their extensive knowledge, resources, and familiarity with Lyme disease are presented as the bad guys, while the vague someone who "knows something is wrong" is presented as more reliable. Indeed, something may be wrong with that person, but there's a large gap between "I feel sorta funky" and "I have Lyme disease."

The fact of the matter is that the lobbying group (created by erstwhile congressional candidate Kurt Hayes) in question is not about Lyme disease. It's about Chronic Lyme Disease. Again, not the same thing.

So we'll just skip the part of the article where Lyme disease is discussed. Yes, Lyme disease is real, and yes it's endemic to this area. It's a public health issue that deserves attention, but that's not the attention that Hayes' group is going for. They're more interested in promoting the quackery of CLD.

Now would be a good time to talk about what CLD is, and the different groups that exist within those who believe they suffer from CLD. We'll use the four categories laid out by Feder et al. in this New England Journal of Medicine paper on CLD.

First, what is CLD? According to the NEJM:

This term is used by a small number of practitioners (often self-designated as "Lyme-literate physicians") to describe patients whom they believe have persistent B. burgdorferi infection, a condition they suggest requires long-term antibiotic treatment and may even be incurable. Although chronic Lyme disease clearly encompasses post–Lyme disease syndrome, it also includes a broad array of illnesses or symptom complexes for which there is no reproducible or convincing scientific evidence of any relationship to B. burgdorferi infection. Chronic Lyme disease is used in North America and increasingly in Europe as a diagnosis for patients with persistent pain, neurocognitive symptoms, fatigue, or all of these symptoms, with or without clinical or serologic evidence of previous early or late Lyme disease. [my bolding]

That's a pretty decent nutshell. But there are different groups within the CLD camp, and they're worth looking at too. Luckily, we have a nice little graphic to see them easily!



Okay, maybe that's too little. Let me reiterate here:

1. Patients in this category have vague and commonplace symptoms like fatigue, depression, headaches, etc. They have no observable evidence of having had a B. burgdorferi (the bacteria that causes Lyme disease) infection, and actually pop up pretty often even in places where Lyme disease is not endemic. Chances are reasonable that they've never had Lyme disease at all.
2. Category two patients have a disease, they just don't have Lyme disease. Rather, they have something else that has been misdiagnosed as CLD.
3. Category three patients have no objective history of Lyme disease, but do have antibodies against B. burgdorferi. Antibodies alone have a low predictive value, so the person may or may not have ever actually had Lyme disease, but their concern is understandable.
4. Category four patients have post-Lyme disease syndrome. They've actually had Lyme disease for sure, and now have something weird going on (often myalgias and the like). It's worth noting that evidence suggests this is not due to a chronic infection, and antibiotic treatment appears ineffective.

All the groups here are suffering from something (more likely, many different somethings), and it's totally understandable that groups 3 and 4 wonder whether Lyme disease is the cause. Groups 1 and 2, on the other hand, are just likely to be confused.

Back to the S&E article, here's someone in group 4:

Lunenburg resident Sheila Webb Richards was diagnosed with Lyme disease about a year ago, and continues to suffer from the symptoms.

A doctor put Webb Richards on antibiotics for 28 days and she felt better for a period, but her symptoms returned a short time after.

Doctors and an infectious-disease specialist have told her that although she continues to test positive for Lyme disease, the disease is not active. They refuse to put her on more antibiotics, Webb Richards says.

"It's frustrating, because my symptoms continue to feel very active," she said.

I'm quite sure that Mrs. Webb Richards is being honest when she expresses frustration, and I don't doubt that she feels crummy. But antibiotics are unlikely to be of any real benefit, at least if you exclude the placebo effect. You can't really blame her for wanting to feel better, even if it is a placebo effect.

Her husband is also frustrated:

Her husband, Tim Richards, said most doctors won't allow his wife to continue on the antibiotics past 28 days because of guidelines set by the Centers for disease Control.

"The heart of the problem is that the profession has guidelines that are decided by a review board," he said. "In the case of Lyme disease, they limit treatment to 28 days of antibiotics. The insurance companies go by that standard."

A "review board"? Yes, a bunch of extremely knowledgeable scientists, doctors, and epidemiologists got together and said "Hey, all this data we've got shows that antibiotics don't really help, but we'll recommend four weeks of treatment just to be safe." The bastards!

Worse yet, the insurance companies use this data to say they won't pay for unnecessary and pointless antibiotics that would only increase medical costs without providing any benefit to the patient. Jerks!

If Mrs. Webb Richards is one of those sympathetic group 4 cases, then our friend from the beginning of the article, Donna Castle, seems to fall into group 1 or 2, where I have much less patience for them. After all, she did seem to indicate that doctors found no evidence of Lyme disease in her daughter. So why does she talk like they did?

Castle's first experience with Lyme disease came about four years ago, when her daughter's Lyme disease was misdiagnosed as amyotrophic lateral sclerosis or ALS (Lou Gehrig's disease).

"As awful as Lyme disease is, it was a relief that she did not have ALS, which is terminal," said Castle, who runs a Lyme disease support group once a month at the Nashoba Valley Medical Center in Ayer.

Well yeah, Lyme disease is way better than ALS. But where's the evidence that she even has Lyme disease? She could be in the first group, where general symptoms lead to that self-diagnosis. Or she could be in the second group, and have something else wrong with her. I certainly hope that Ms. Castle is looking for the real cause of her daughter's suffering, though it sounds like she's put all her eggs in the rickety CLD basket.

So, what does this all lead up to? Legislation!

Hayes and Castle are now pushing for new legislation that would protect doctors who prescribe prolonged antibiotic treatment.

House Bill 1148, introduced by state Rep. Bob Hargraves, R-Groton, is tentatively scheduled for a hearing at the Statehouse, Sept. 22.

This bill is titled "An Act relative to the treatment of chronic Lyme disease" and the full text is here.

It's short though, so I'll just quote it:

Chapter 112 of the General Laws is hereby amended by inserting after section 12CC the following section: -

12DD. A physician may prescribe, administer or dispense antibiotic therapy for therapeutic purposes to a person diagnosed with and having symptoms of Lyme disease of [Sic] a diagnosis and treatment plan has been documented in the physician’s medical record for that patient and no physician shall be subject to disciplinary action solely for prescribing, administering or dispensing long-term antibiotic therapy fo9r [Sic] a therapeutic purpose for a patient clinically diagnosed with Lyme disease if a diagnoses and treatment plan has been documented in the physician’s medical record for that patient. [my bolding]

Man, are all bills that poorly-spellchecked?

Here's the thing about this bill, though. The way it's worded, it doesn't apply to Castle's daughter, and only may apply to Mrs. Webb Richards. Webb Richards doesn't have Lyme disease currently, she has post Lyme disease syndrome. Judging from the article, Castle's daughter doesn't appear to have ever been diagnosed with Lyme disease.

I won't even go into how prescribing an antibiotic that has no effect can't really said to be done "for therapeutic purposes".

But all that's just nitpicking. The purpose of the bill is to make sure people who think they have CLD can get vast amounts of antibiotics with no trouble. Even though antibiotics haven't been proven to do anything beneficial for them.

Nor would we expect antibiotics to do anything. Antibiotics in the treatment of Lyme disease are used to kill the B. burgdorferi bacteria. People with CLD don't have this bacteria around to kill anymore, and some of them never had it in the first place.

Of course, in addition to increasing medical costs for no reason, overprescription of antibiotics tends to lead to antibiotic-resistant bacteria. They should just call this thing the "MRSA and drug-resistant tuberculosis promotion bill."

Anyway, local politicians have their stances. Jen Benson unfortunately calls herself a "strong supporter" of it. Jennifer Flanagan, on the other hand, is "very interested in hearing from both sides on the issue."

Consider this my side, Rep. Flanagan! Please note that it's the side that actually cites evidence.

This bill is a bad idea, built on willfully ignoring the scientific evidence. People with CLD are suffering, but there's no evidence to suggest it's Lyme disease at the root of their suffering or that they will benefit from antibiotics.

Let's spend our time trying to figure out what actually is wrong with them, whether it be mental or physical, and not waste money and endanger public health by throwing antibiotics at them. People need real help, not placebos.