Lyme disease. Real? Hypochondria? Medical conspiracy?
I decided to venture down the Lyme disease rabbit hole after two events. The first was an alarmist Australian television program doing what the medium does – dramatically appealing to human interest with conflict and a sometimes contrived journalistic ideal of presenting “both” sides to every story. The program screamed that Lyme disease was an emerging Australian epidemic officials refused to do anything about. I shrugged it off as typical hype, and typical complaints about government indifference.
The second event was a later casual foray into the GoFundMe web site, where I was unintentionally side-tracked reading stories about people needing thousands of dollars for Lyme disease treatment. My curiosity was regarding how these thousands might be spent. What was their prescribed alternative course of treatment? And a later search – how many people have turned to GoFundMe for their Lyme disease medical catastrophe that requires cash? Thousands. Thousands of people looking for thousands of dollars each – and that’s only on the GoFundMe site – people who aren’t quietly paying out of pocket, but hoping someone will take pity on their predicament. How many on GoFundMe have legitimate medical crises, and how many are outright fraudsters? Some of the photos and situations seemed a bit contrived - “Our family wasn’t just stuck by lightning – we were struck by lightning TWICE!”
The challenge is that we seem to be entering an era similar to the patent medicine era - a time when physicians and pharmacists saw each other as competition. The causative agents for many diseases were being discovered, but well-defined cures were still experimental. Physicians might offer advice, but pharmacists and travelling salesmen could dispense elixirs – opium, cocaine, alcohol, and mystery ingredients guaranteed to make the patient feel better if not cured. Patent medicine might be cheaper than a visit to the physician, though in hindsight, neither offered an actual cure.
In the current era, especially in the US, the reputation of Big Pharma has taken a hit. The success of vaccines has become ubiquitous and invisible (though measles and whooping cough outbreaks are enlightening portions of the population). The financial margins of hospitals, physician groups, and insurance companies are seen by many (and each other) as taking priority over medical concerns, with the physical, financial, and psychological wellbeing of patients taking backseat. Into this mix the internet swirls with diagnoses, cures, advertisements, and conspiracy theories. I’m not going to provide the URL to the web site where a very scientific-looking article claims that Lyme disease is a government experiment being covered up by the Centers for Disease Control. Some in the tech sector view the FDA with the same disdain Uber has for taxi driver unions – protecting entrenched interests and blocking progress. With physicians pushed to see as many patients as possible; give ‘em a pill and get ‘em out; antibiotics and drugs have been overprescribed and the carefully built reputation of the field is taking a beating.
Though it’s fairly documented that exercise, eating fruits and vegetables, and sufficient sleep go a long way towards preventing some diseases, a fairly intelligent portion of the population perceives that as a religious ideal that can never be fully achieved. Remedial supplements have surpassed prayer, which was the avenue to health when disease was believed to be caused by sin.
Among this swirling mess of competing financial interests, hype, advertising, information, and misinformation: Lyme disease. In the US, it’s fairly well known that Lyme disease is related to ticks and got its name from a cluster of cases that were noted around Lyme, Connecticut. It’s also known that a small percentage of doctors are quacks, promote themselves to hypochondriacs, and many mainstream doctors don’t have the time or would rather not bother with patients having vague symptoms that never seem to go away. Insurance companies also would like to shun anyone who’s an ongoing drain to their bottom line. Alternative practitioners and supplement manufacturers make up for this lack of love. In the realm of conspiracy theories, alternative practitioners and supplement manufacturers seem to get a free pass. Efforts to certify supplements as actually containing what’s on the label add to the cost, and may easily drive the casual purchaser to the less expensive, uncertified brand. Why spend excessively on a vague concern? Say an extra Hail Mary and throw the cheaper brand in the shopping cart unless you’re convinced you need the real deal. Either way, the supplement industry rings up a sale, and cash brings political clout and impacts regulation.
Another aspect of the Lyme disease challenge is that some consumers have a simplified understanding of diagnostic medicine – a test result means either yes or no, this pill solves that problem. A time graph of the rise and fall or persistence of IgM, IgG, or IgE antibodies is beyond the scope of anyone who struggled with algebra. A New York Times editorial argues that maybe we shouldn’t even subject most students to algebra. The physician says “trust me;” the alternative practitioner says “no, trust me!”, and someone without the tools to fully understand the data makes the decision based on what feels right.
And so… Lyme disease in Australia? The government says the organism that causes the disease is not found in local ticks. The ticks are different; the causative agent hasn’t been found. Are all the cases from Australians who acquired it outside the country? The Lyme Disease Association of Australia doesn’t think so. As an American, the crazy part of this is learning that Australia has a tick that creates problems worse than Lyme disease – the paralysis tick - Ixodes holocyclus. Ixodes holocyclus has been known to cause paralysis and death in dogs, sheep, and babies. But a good meme is hard to put down. Like Americans, Australians’ first thought when they see a tick seems to be Lyme disease. Effects of the paralysis tick are more immediate, and potentially more severe – yet Lyme disease seems to be getting all the glory.
The Lyme Disease Association of Australia acknowledges that there are other diseases and conditions spread by Australian ticks that may potentially be the source of undiagnosed medical symptoms. This is more discretely placed in their subtitle “Tick Borne Disease Awareness & Advocacy”. Even though a variety of other diseases are spread by Australian ticks, Lyme disease – the one government investigations have shown is not present – gets the spotlight. In the antipodean land that, outside of the tourist industry points with pride to it’s myriad venomous spiders, snakes, and jellyfish, why are so many Australians convinced they have an ailment caused by something that’s native to the US and Europe? Why does Lyme disease seem to get all the press and love?
Of course Lyme disease exists. The question is whether it’s as prevalent as the internet buzz suggests, and whether it’s more than extremely rare in Australia, and when occurs is due to visits to the US or Europe. In the marketing sense, Lyme disease seems to be taking off like the gluten-free movement. While Scientific American says that only about 1% of the population would actually benefit from a gluten-free diet, the market for gluten-free products reached $1.77 billion in the US. In order to boost sales, McDonald’s, which hesitates to even offer a vegetarian burger, began gluten-free offerings in Britain. There are people who truly need to avoid gluten due to their medical condition and there are truly people who have Lyme disease. But considering that a tick needs to be carrying Borrelia burgdorferi and remain attached for 36-48 hours to transmit the disease(thoroughly studied in mice), what are the odds that a human with modern hygienic practices leaves a tick attached for the duration necessary for transmission?
A pediatrician in Western Massachusetts, near ground zero of where the cause of Lyme disease was discovered, named, and is still prevalent sees many patients – children – who have ticks attached, no ticks, or vague suspicious symptoms. He describes the course of investigation and treatment – which often involves monitoring the patient with different blood tests repeated over a period of time. He has a name for the so-called Lyme-literate physicians who stray from the accepted path of diagnoses – Lymlits. His frustration is that the Lymlits don’t follow evidence-based diagnosis and treatment, and they imply or make the outright claim that most doctors are Lyme illiterate.
Given the hype surrounding Lyme disease, not only are most Americans and many Australians aware of the disease; it seems farfetched that most American doctors are Lyme disease illiterate. What’s much more likely is that given the pressure to crank through patients, and given the tendency of many patients to not follow orders, blood tests don’t get performed on a timely basis and follow-up investigations are likely to be missed. In most cases, the onus is on the patient to follow through, and that doesn’t happen. Of course anyone paranoid about Lyme disease is going to follow through. But for the thousands of less diligent patients – if Lyme disease were as prevalent as the paranoid patients believe, there truly would be an epidemic – consisting of all the patients who never bother going for their blood test or follow-up blood test. Because… no one enjoys getting their blood drawn. A Science News article sums up well the odds: Five reasons to not totally panic about ticks and Lyme disease.
But what about the Australian situation? As I mention before – Australia has plenty of reasons to be paranoid about ticks. But for Australians on the east coast, the paranoia should be more focussed on the hazards of paralysis ticks. And for Australia as a whole, there are plenty of native toxins and diseases that cause vague symptoms, arthritic, and neurological conditions. Australia also has a problem with algae toxins, which can be deadly and have recently been implicated in Alzheimer-like neurological symptoms. An article from Canada provides telling statistics about the Lyme disease industry; researchers sent 40 test specimens to two labs advertising advanced Lyme disease testing. The specimens were from patients who had no symptoms, were from areas where Lyme disease does not exist, and had not visited areas where Lyme disease is prevalent. One of the labs reported that 11 of the specimens were positive for Lyme disease. For patients who do have symptoms, and are frustrated with mainstream health care system’s lack of concern, the article also mentions a much more productive route. British Columbia Women’s Hospital & Health Centre has a Complex Chronic Diseases Program,and Todd Hatchette, an infectious disease doctor believes every Canadian province should have a similar clinic. In the US, health care is very profit driven. Of course in Canada and Australia there is competition for research dollars and other forms of competition, but in countries with public health systems like Canada and Australia, it makes sense to refer difficult cases to research facilities where they can be compared and investigated more thoroughly. Rather than buying in to the Lyme disease hype, Australia would be well-served by thorough investigation of what may be local, undiscovered, or poorly understood disease agents.
- Other resources:
- Tick Removal
- Definition of Lyme disease
- How do you ethically prescribe a placebo?
- FDA Advisory on Lyme disease testing
James Lamb is a California licensed Clinical Laboratory Scientist. Over the years he has spent much time in outdoor pursuits and removed many ticks from his body. To his knowledge, he is not and never has been infected with Lyme disease.
