Lyme, Pseudoscience, and Money

It's that time of year again: the birds are singing, the sun is shining, it's getting warmer... You know what that means—yes, its Lyme disease season! What's that? You didn't learn about the two seasons in school growing up? Lyme season and not-Lyme season? Hmmm, what kind of school did you go to?

In fact, for most of the country, Lyme disease and its seasonality is not an issue. But for those of us lucky enough to live in either the Northeast or the Upper Midwest, Lyme disease is a steadily increasing part of our lives; and for those of us in the infectious disease community, our practices as well. Ordinarily, this would not be an issue—just another disease, another patient population to treat. But Lyme disease is different...or so some groups would have you believe...

Lyme, it’s not just a town in Connecticut

Lyme disease is so named because it was first recognized in the town of Old Lyme, Connecticut in 1975, when a group of astute mothers noticed that all of their children had been diagnosed with the same arthritis and been told they had a rheumatologic disease. However, this ailment was seasonal, worse in the warm spring and summer months—Lyme season. It was eventually realized that this was in fact an infection caused by Borrelia burgdorferi. The bacteria is a spirochete that enters during the bite of an infected Ixodes tick, which carries the bacteria in its midgut ^[1]. As the tick regurgitates saliva into the skin during its blood meal, the tick also regurgitates the spirochete, which proceeds to infect the skin, multiply, and then spread to other sites. As a result of its initial skin site of inoculation, one of the classic findings in Lyme disease (though only present in <30% of patients) is a targetoid rash with the tick bite at the center of the target. If one were to biopsy and/or culture the spreading ring, it would be filled with spirochetes. As it spreads beyond the skin it can cause systemic symptoms including aches, pains, fever, etc.

Most Lyme is diagnosed and treated during this early stage, and it resolves uneventfully. However, if the infection is missed, or misdiagnosed and not treated, the bacteria spreads to other sites. The fever and systemic symptoms improve for a while, but then the patient may develop an arrhythmia with heart block, or a meningitis, or a facial nerve defect, or arthritis. The disease is still equally treatable at this stage, but does need to be treated for longer and now unfortunately with more possibility of long term effects—like persistent arrhythmia or facial nerve palsy. Thus, I freely admit that Lyme disease can become or at least present like a chronic disease. However even at this stage, once it is treated, the infection is dealt with and gone.

And that last point is where some opinions diverge into pseudoscience.

Pseudoscience: it’s not just about vaccines

Because it has some chronicity to it, and because the normal mainstream medical community did fail to immediately identify it definitively, there is a highly vocal and active Lyme advocacy community that believes that Lyme disease causes much more than the illness described above. In particular, it tries to paint Lyme as the cause of whatever ails you—a long laundry list of symptoms that read like side effects from a pharmaceutical ad, from headache to testicular pain to death. More broadly, this community has a name for the real disease that is the scourge of the Northeast: Chronic Lyme.

In the view of many of these so-called Lyme advocacy groups and the “Lyme-literate” physicians that work with them, Lyme disease cannot be treated with a short course of antibiotics after the initial weeks of infection. They claim the bacteria hides out and ‘weakens the immune system’. What they say is needed is long-term home IV antibiotic therapy accompanied by multiple doctors visits. And as Lyme can cause anything, in their minds, nearly any symptom warrants such management. But what if the blood tests don’t show Lyme? There’s an answer for that too—the antibody test for Lyme disease is inaccurate and the disease must be diagnosed clinically. Or, alternatively, samples can be sent to specialized labs in California (not even a state with much Lyme disease) and elsewhere that will often ‘more successfully diagnose’ Lyme disease. Finally, for them it isn’t just one disease caused by Borrelia—no, ‘Lyme disease’ encompasses many other diseases supposedly carried by ticks. Some of these really are—Babesia, Anaplasma, Ehrlichia—and others we know really are not—Mycoplasma, Bartonella. And these all require more antibiotics, explain more symptoms, and lead to more doctors visits and testing. This is the pseudoscience of chronic Lyme.

Now, I will fully admit that there is a lot that science does not know about the exact pathogenesis of Lyme disease, but there is a lot that it does know:

1. We know that “recurrent Lyme” is caused, in fact, by multiple separate infections.
2. We know that there is no reason to doubt the accuracy of the Lyme diagnostic testing. The ELISA antibody test, a first-line test, is overly sensitive as all good screens are. And the second-line test, the Western Blot, is highly specific. A negative test is a negative test.
3. As cited above, we know that some other pathogens are indeed tick-borne--but by different species of ticks than the ones that carry Lyme and often in different geographic or seasonal distributions. Just because someone has Lyme disease does not mean they automatically have these other diseases.

And so on.

So what’s this all about? Like most complex diseases, Lyme disease is not neat or tidy or always easily explained by physicians. It is regional, meaning there are many doctors in many parts of the country who are as ignorant of Lyme disease and how it works as someone untrained in medicine; and so they get part of the facts, part of the story, and confabulate or confuse or just make up the rest. This is the perfect setup for explanations partially based in fact or a gross misunderstanding of fact: pseudoscience.

Unfortunately, as with the anti-vaccine movement (as I have discussed Update and in The Magazine), as we will see below there are those who would exploit this ignorance for their personal gain.

Catching up with the Benjamins

There are a number of Lyme disease groups, as I mentioned above, that thrive on this idea of Chronic Lyme and how the mainstream medical community does not know how to diagnose or manage it. And they recommend and feed into lab testing centers and eventually treating physicians.

Three of the sites for these groups are:

• The International Lyme and Associated Diseases Society, ILADS
• The Tick-Borne Diseases Alliance, TBDA
• Mercola.com

And there are many, many others. It is no coincidence that, along with Lyme Disease many of these sites also promote homeopathy and are anti-vaccine--two other pillars of pseudoscientific thought. But there is another thing they promote: themselves--and for nothing less than cold hard cash.

• Joseph Mercola uses his site to sell his products, his books, and aggressively market to anybody who will listen. He is a decidedly for-profit outfit despite his decrying of traditional medicine’s mercenary ties to pharmaceutical companies.
• ILADS tries to sell doctors courses and training materials so that they may become “Lyme-literate” which is a distinction utterly meaningless to any of the certifying bodies in state and national government. These courses and materials cost hundreds if not thousands of dollars and the already-lyme-literate physicians who speak at them receive substantial kickbacks and payments.
• TBDA seems to be the most benign of the bunch, and, to be fair, other than being utterly wrong about Lyme disease, does not seem to be gaining financially (aside from donations) from this misinformation.

The labs and testing companies that have cropped up to feed this Chronic Lyme industry are numerous, and all benefit financially off of questionable practices. One such lab, Igenex, has consistently had positive tests for Lyme and other tick-borne diseases when every other lab finds the same samples negative. They gain an incredible amount of business from providers who badly want to diagnose Lyme disease (more on why below) and so they benefit from what is likely an inaccurate test. Indeed, New York State fails to recognize them as an accredited lab due to concerns with their quality and accuracy. But they keep raking in money from other parts of the country, so their practices are unlikely to change.

And then we come to the physicians themselves, doctors like Joseph Burrascano who practices in the Hamptons and had his license suspended for 6 months because of negligence and improper practice in caring for a patient with “Lyme disease”--a patient whom he was treating with unnecessary prolonged antibiotics. The common practice among these “Lyme-literate” physicians is, as I mentioned earlier, prolonged antibiotics by IV or intramuscular injection, with frequent follow up visits. They are able to bill more for such extreme and frequent care and so there is definitive financial gain to be had from the diagnosis of Lyme disease, if this is one’s practice pattern.

There is a lot of money to be had in Lyme disease treatment if one isn’t limited by real diseases, real diagnoses, or a silly thing like professional ethics.

Enough Tick Talk

To summarize, welcome to Lyme season. If you or a family member or friend is bitten by a tick, try to remember a few things:

1. The tick needs at least 24 hours on you to transmit the Lyme bacteria.
2. If bitten by a tick in a Lyme endemic area, watch for a bullseye rash at the site of the tick bite. Also watch for onset of a flu-like illness within the next 1-2 weeks--this could be acute Lyme disease.
3. Lyme at any stage is very treatable with a 14-28 day course of doxycycline (amoxicillin in children under 8).
4. If the doctor you are seeing says they are Lyme-literate...they aren’t. If they send your blood to Igenex, ask them to send it to Stony Brook instead.
5. And if anybody wants to put an IV in you or a needle in your arm to treat your early stage, uncomplicated Lyme, run the other way.

So enjoy tromping through the woods and grass, and watch out for those ticks...

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