The increasingly bitter debate over Lyme disease is something like the partisan divide in American politics — “characterized less by warring sides than by parallel universes,” as Mary Beth Pfeiffer observes in her new book “Lyme: The First Epidemic of Climate Change.”
In one universe, she writes, are traditional infectious-disease physicians, who see Lyme as a bacterial nuisance but not a crisis — often relatively easy to diagnose and even easier to treat with a few weeks of antibiotics. It is seldom dangerous and very rarely deadly.
In the other universe are patients, many debilitated and suffering, who believe they are afflicted by “chronic Lyme,” and their sympathetic doctors, who call themselves “Lyme literate.” These doctors diagnose the disease based on symptoms rather than blood tests, and are willing to treat patients with unorthodox antibiotic courses and other treatments — with little scientific evidence to support their use.
The situation cries out for a good book — an evidence-based deep dive by a serious journalist into this baffling tick-borne disease — and it would be gratifying to report that Pfeiffer had written it. An investigative reporter for The Poughkeepsie Journal in the Hudson Valley (an early epicenter of the Lyme epidemic), she has legitimate credentials and knows her way around a medical study. As her subtitle shows, she takes mainstream science seriously.
Unfortunately, her book falls far short of its promise — ultimately widening the gap between the two universes she describes. Instead of a careful and equal weighing of evidence on both sides, she tendentiously reviews Lyme science in favor of the “literate” side, and too easily buys into the view that the scientific community is deliberately overlooking evidence it dislikes.
At her best, Pfeiffer uses flowing prose, vivid metaphors, harrowing stories of illness, and summaries of research to suggest that the seemingly inexorable rise of Lyme disease is a perfect storm of our own making. We colonized forested areas; we protected deer and other wildlife essential to tick life cycles; and as summers grow longer and winters shorter thanks to human-caused global warming, we’ve increased the likelihood that suburban gardeners and hikers will be bitten by infected ticks.
Pfeiffer offers a detailed survey of current debates and promising animal and lab research on Lyme, like xenodiagnoses (testing ticks for the disease after they’ve had a chance to feed on animals with suspected infection) and prolonged immune responses to the remnants of destroyed bacteria. But in a conceptual leap, she cites these studies as potential explanations for befuddling symptoms like chronic joint pain, brain fog, and fatigue, even though there is little clinical evidence in humans to support them. This sets a pattern of relying on descriptive narratives, anecdotes, and very early research to make factual claims that seem premature at best.
In a contested, controversial field, source transparency is paramount, but it took me much effort and persistence to distinguish between myth, perception, and fact in Pfeiffer’s book. Trying to find supporting evidence for many of her assertions led me on frustrating trips through the 20-page references section without links between the text and a corresponding citation. This may be a persnickety critique, but it is a symptom of a significant problem: Pfeiffer repeatedly fails to remind readers what is opinion and what is fact.
Her assessment of the scientific evidence is often unbalanced. She dismisses randomized, double-blind, placebo-controlled clinical trials in humans — the highest-quality evidence we have — for minor flaws. But she doesn’t turn that same critical eye on research reporting that, for example, bacterial persistence “potentially explains why many people stay sick even after they are treated.” In a five-page section reviewing multiple studies and interviewing different researchers, she puts little emphasis on the crucial caveat that this persistence phenomenon has so far been observed only in lab and animal studies.
Pfeiffer also tends to blame scientific prejudice when the Lyme researchers she favors fail to receive grant funding or to get their work published in journals. This overlooks some crucial context: While success rates for NIH grants vary, they tend to fall between 10 to 20 percent. If her assertions were true it would indeed be a disturbing trend, but considering many of the researchers she cites were recently awarded NIH grants, more evidence is needed before the reader can come to the same conclusion as the author.
These examples bring to light an illuminating juxtaposition in a book linking climate change and Lyme. For Pfeiffer, climate change is uncontroversial; yet she depicts Lyme science as shrouded in uncertainty and conspiracy. Many of her insinuations sound eerily similar to the familiar aspersions cast by climate deniers against the overwhelming scientific consensus on climate change.
While the studies supporting Lyme guidelines are not as robust as climate science, an international consensus does exist for the diagnosis and treatment of Lyme disease, which advocates similar diagnostic protocols and standard antibiotic treatment courses. The author reports on conflicts of interest by guideline writers of the Infectious Diseases Society of America (IDSA). Even though a special review upheld the guidelines, Pfeiffer uses guilt by association to suggest that similar bodies in other countries cannot be trusted. (In fact, panels of scientists in Switzerland, Canada, and the United Kingdom have independently evaluated the evidence and published the same or very similar guidelines.)
Part of the confusion lies in Pfeiffer’s conflation of a threshold for scientific consensus with a threshold for medical treatment. There is a lot of subjectivity in weighing evidence, and reasonable scientists can disagree. But population-level recommendations require as much high-quality evidence as possible, favoring data from human trials over laboratory and animal studies to avoid the “medical whiplash” that comes of reversing established guidelines. In places where evidence is thin, recommendations from recognized experts fill the gaps.
And the science behind such guidelines is different from the case-by-case practice of medicine, which relies not just on studies but also on clinical judgment. Pfeiffer characterizes Lyme treatment as cookbook medicine, the only recipe written by the IDSA. But physicians and patients face myriad uncertainties about Lyme and many other diseases; ideally they decide together when to deviate from a guideline because of individual circumstances. Some people are more willing than others to take on the unknown risks of experimental treatments (hence the recent push for a federal “right to try” law).
Pfeiffer lauds physicians who use experimental treatments based on such early evidence — and they may yet prove to be pioneers. But the evidence required for scientific consensus is much more stringent than what patients might need to feel comfortable in undergoing treatment themselves. If you have diabetes, no one can stop you from treatment based on your faith in an in-vitro study of essential oils. But few scientists will agree to update clinical guidelines for your preferred treatment without higher-quality evidence.
In addition, “Lyme literate” physicians who advocate massive antibiotic interventions are flying in the face of efforts to conserve antibiotics, a limited resource in an age of rising resistance. As part of Pfeiffer’s lament that Lyme patients struggle to receive prescriptions for nonstandard antibiotic use, she paints these doctors as victims of overreaching government regulators. But how to distribute limited resources is a policy question on which reasonable people can disagree.
Treatment guidelines change slowly — often much too slowly for suffering patients. Calling for more rapid action in the face of a perceived crisis is laudable (think of ACT UP’s AIDS activism in the 1980s and 1990s), but as critics of the “right to try” bill argue, the rush for access to nonstandard treatments can also put patients at risk. Instead, the book might have paid more attention to groups trying to bridge the divide by focusing on improving symptoms for suffering, debilitated patients, regardless of the cause of their illness.
An excerpt from “Lyme: The First Epidemic of Climate Change” has been shared tens of thousands of times on Facebook, and the disease is getting more and more coverage from the likes of Vox and The New York Times. Sadly, such coverage is all too likely to overlook crucial questions of bias and evidence quality. With lively narratives and clear heroes and victims, Pfeiffer’s book is likely to become a totem — but to one side only. We should all be worried when scientific uncertainty is adjudicated via clicks and shares
David Scales (@davidascales) is an internal medicine physician at New York Presbyterian and an assistant professor at Weill Cornell Medical College.
The disparity between the 2 sides is not so black and white as you suggest. Lyme literate physicians do not only rely on symptoms to diagnose, they also use labwork and blood tests. The major difference is the lyme literate doctors do not rely on decades old tests that were originally designed for surveillance purposes and that are less than 50 percent accurate if tested too early or too late. They look for antibodies SPECIFIC to borrellia burgdorferi and will make a clinical diagnosis based on a number of factors. Unlike a physician UNEDUCATED about lyme or AFRAID Dr. WORMSER and the IDSA will come after his or her practice for treating a lyme patient outside their guidelines. Guidelines that miss many people with late stage lyme.
I sadly have to agree with this review. Pfeiffer did an admirable job of research and of explaining the complicated web of tick biology and ecology, climate change, and the surge of tick-borne diseases around the world. But she writes a one-sided story, perhaps meant to create narrative tension and good story-telling. From the beginning, she creates a fictional world in which everyone on one side is evil and those on the other are ignored, abused, and left to physical and psychological trauma (or lack of funding). There is compelling and sorrowful truth to the suffering of people related in this book. But the causes and the scientific-medical attempts at solving these problems are so very much more complicated than Pfeiffer describes. As the reviewer writes, “The situation cries out for a good book — an evidence-based deep dive by a serious journalist into this baffling tick-borne disease — and it would be gratifying to report that Pfeiffer had written it…Unfortunately, her book falls far short of its promise — ultimately widening the gap between the two universes she describes.” I hope that the two sides can find a middle ground to better understand ticks and the diseases they carry, thereby reducing the harm inflicted on people. I don’t think this book helped.
Interesting that a “PHD in Biology” can’t actually refute any of the science or research cited in the book…. but only lamely editorializes and impotently agrees with the reviewer (who also didn’t successfully challenge any of the book’s referenced medical evidence). I smell a rat – make that two. Do your own homework folks. For reasons unknown, there are some people don’t want you to know the truth about the complexities of lyme disease.
Exactly. I can come up with one reason right off the bat. $
For someone complaining about scientific rigor, this physician writer sure does skip a huge body of published research in his haste to discount the totality of the book. Just one suspicious omission…. he suggests that the “persistence of the Borrelia bacteria or spirochete has only been proven in lab and animal studies”… with is absolutely false. Here’s just one human study that establishes this phenomenon from a very credible source – the NCBI – https://www.ncbi.nlm.nih.gov/pubmed/29662016. Even without this study and others demonstrating that the Lyme bacteria is persistent, if not downright impossible to kill, anyone with any level of critical thinking skill could deduct that if the bacteria is persistent in monkeys, dogs, horses, mice, gerbils and Petri dishes it follows that it’s probably going to cause lasting problems in humans. “If it walks like a duck and quacks like a duck, it’s probably a duck, right?!” But what do I know, I’m just another poor sap suffering from Late Stage Neuro Lyme that wasn’t helped by the IDSA’s 14-28 day antibiotic regime. This all demonstrates one of two things -either he’s blindly parroting the IDSA company line or he’s not performing even the simplest scientific due diligence. Both these options make him easy to discount as any kind credible authority on Lyme or any literature related to the disease.
It’s always suspicious when a “physician” writer takes such a narrow, uncompassionate view of the complexities of Lyme. Also suspect is that after “going to all that trouble reading 20-page reference sections” (isn’t that what a good doc does?!), he can’t actually refute any of the evidence the author presents. My good doctor, if you want a solid example of scientific and research funding prejudice, how about the the 24 mil spent on Lyme research in 2017 – disease that affects hundreds Of thousands of sufferers vs the near billion dollar ask Congress made for Zika in its first year on the radar – a disease that affects mere thousands. The biggest and fastest growing vector borne disease in America…. How can such a disparity be rationalized? You’re probably a better writer than doctor, but Since your editorial style seems to lack any real critical rigor or balance, perhaps movie reviews would be a better venue for your biased perspective… than science.
Your paper is political, pretending t0 be scientific. You complain that Pfeiffer implies that the the scientific community is deliberately overlooking evidence it dislikes – which is exactly what you are doing – and exactly what the outdated IDSA guidelines for Lyme continue to do. You read one side of a complex debate while ignoring decades of material on all sides of this debate. You have not done your due diligence – yet, your argument against Pfeiffer’s book is essentially that she does not agree with you and the established IDSA guidelines – as if they had a monopoly on science. You repeat the propaganda that “there is no science behind the other side”. If you had done one fraction of the due diligence to understand this “debate”, you might be able to see how full of nonsense your critique is. But not likely. Studies show that the more data you present to someone with an already entrenched political position (yes, your position is clearly political), the more resistant they are to new data. Take a look at ALL of the research from all sides of this issue. This will take a lot more than a couple afternoons. You won’t like what you see – obviously.
Thank you for that eloquently written comment. Even with my lyme brain I could see the bias in that book review so apparently clear. For God’s sakes, he makes Lyme literate doctors sound like cowboy quacks! Of course they use bloodwork and testing! They just won’t dismiss a sick patient because he/she has 3 or 4 bars instead of 5 on the western blot, because 1- he/she RAN a western blot and 2- he knows those tests aren’t sensitive enough and the bacteria hide and morph, so he looks for lyme specific antibodies, plus rules out other disease based on lab work, tests for other pathogens and coinfections, etc. Sure, there may be charlatans out there profiting on lyme patients, but those are FRAUDS, NOT lyme literate Medical Doctors!
“as summers grow longer and winters shorter thanks to human-caused global warming”
There is no evidence that this is so.
“While the studies supporting Lyme guidelines are not as robust as climate science”
Climate science is not robust, it depends on flawed modelling and heavily adjusted data.
Sad that such biased reporting proliferates. It’s popularity really does reveal the parallel universes of the social imagination created by lack of critical thinking.
Climate change is tertiary not the primary issue. By avoiding the truth May Beth Pfeiffer has just found a new way to politicize lyme (after all, look at the institution from which there is a response).
Patients and Scientist are pushing back against this ridiculousness. The real conversation is about OspA, B cell immune suppression and tolerance/cross tolerance. People are dying from tick borne disease while the “cabal” falsified the case definition to eliminate 85% of the sickest with the neuro form of the disease. This made the vaccine look 85% effective on the remaining 15% that would not have had a chronic illness anyway. This same cabal started and acted as investors in diagnostic companies that were basing results on the falsified definition. What every it took to make a buck and avoid jail since they knew there was no cure.
Any arguments about climate change and antibiotics are a false conversation meant to distract from the seriousness of the disease and the depths of the fraud. If you want to help a lyme patient and don’t want to become one, start demanding DOJ hearings. Start demanding the blood supply and pregnant woman be screened. Start demanding that Tick Borne Disease be handed over to the cancer researchers who have a better chance to address this successfully.
OspA-F are lipopoproteins, of which several are found on the outer membranes of some serotypes of bacteria, spirochete, mycoplasma, and fungi (but not all). A prevalent misconception is that OspA is specifically and exclusively a “fungal endotoxin”.
Have you seen the lawsuit recently filed in Texas against doctors, insurance companies, and the IDSA? In the late 80’s when insurance realized how expensive lyme could be to treat they began paying doctors to deny treatment and paying researchers to ignore and change previous research. Massive human rights violations. Aids, zika, etc (not denying the need for research into any disease) have had huge amounts of money thrown at them while lyme which affects more people is ignored.
Well, we tried to train her, but Pfeiffer wasn’t havin any science. See more about this Lyme fraud at:
TruthCures.org and ActionLyme.org
The scam is about the serological case definition being falsified at Dearborn (1994) to exclude the systemic damage from the fungal endotoxin of a “vaccine,” OspA. I challenge anyone reading this to explain exactly what OspA is. Then will those scientists who are honest and admit what OspA is, will be helping us indict the ALDF.com which is the RICO cabal Senator Blumenthal sued for anti-trust in 2006. Triacyl lipoproteins are the opposite of vaccines.
Anyone who denies that, is not a scientist. Pubmed shows thousands of scientists who claim TLR2/1 agonists cause immunosuppression.
Pfeiffer was not interested when I tried to explain it to her, LONG before she decided to write a book. So, this attack she is receiving on this website (undark.org) is all on her. She refused to look at the science.
— Kathleen Dickson
BS Chemistry, Southern CT State U.