King: Watch out for Lyme disease

Lyme disease, dubbed one of the “deadly dozen” by a recent Wildlife Conservation Society report, could skyrocket as global shifts in temperature and precipitation transform ecosystems. Vector-borne diseases such as Lyme are transmitted to humans by insects, and they, like the insects that act as the vectors, tend to be specific to a distinct ecosystem. But climate change may lead to a loss of these natural boundaries — generating a spike in rates of Lyme and other infectious diseases.

The incidence and migration of Lyme disease throughout the upper East Coast and Midwest should be a warning to us. The restoration of the deciduous forests to the eastern United States after their near-total destruction by European immigrants was a crowning achievement of the Conservationist Movement. The new habitat is mostly devoid of large predators, as a result of hunting and other human activities, allowing many large mammals to flourish unfettered. Since Lyme disease is transferred to humans by the bite of the adult deer tick, the prevalence of Lyme disease is correlated with the population of deer. Connecticut is grossly overpopulated with deer, having approximately 60 deer per square mile in a habitat that can sustainably support no more than 10. These are the ideal conditions for the propagation of the disease. (Indeed, Connecticut is the epicenter of Lyme disease. The Constitution State already has the nation’s highest Lyme disease prevalence, and it is rising.)

Lyme disease has been associated with controversy since 1977, when then-Yale physician Dr. Allen Steere reclassified a group of misdiagnosed cases of juvenile arthritis as Lyme arthritis. Dr. Steere named the newly discovered disease process for the location of the patient cluster: Lyme, in southwestern Connecticut. The most recent dispute involves the diagnosis of chronic Lyme disease or post Lyme syndrome. Most scientists and researchers vehemently deny the existence of chronic Lyme disease, citing numerous studies that demonstrate no biological evidence for its existence. Patient advocacy groups dispute the scientific evidence and often enjoy outsized influence over policymakers.

The recent skirmishes surrounding the diagnosis of chronic Lyme disease are a remarkable instance of déjà vu. GlaxoSmithKline’s 1998 LYMErix vaccine was created to address the rising Lyme disease epidemic. Vaccine recipients, often supported by patient advocacy groups, filed class-action lawsuits against GlaxoSmithKline, alleging LYMErix caused health problems; as a result, LYMErix vaccine production ceased in 2002.

Contemporary medical literature described the fate of LYMErix as “a cautionary tale.” Ten years later, the toxic environment surrounding Lyme disease and the LYMErix vaccine makes new significant scientific discourse virtually impossible, as advocates without the appropriate scientific training continue to dominate the discussion.

Lyme disease is indeed a cautionary tale. Scientists must modify their practice of publishing solely for scholarly journals by also communicating their findings to a larger audience. Scientific expertise can contest patient advocacy groups and silence policymakers by demonstrating that these groups aren’t always cognizant of best treatment practices. Given the potential climate-driven ecological changes that could lead to the further increase of a widespread infection, the noxious scientific environment surrounding Lyme disease could become a perfect storm that fuels a significant epidemic.

Leslie King, M.D., M.P.H., is the founding director of Flying Physicians International. She currently is completing a one-year mid-career master’s degree at the Yale School of Forestry & Environmental Studies, focusing on communications

of the impacts of climate change on human health.

Comments

  • Sharon H

    Dr. King, I appreciate your comments. I would agree that climate change and the proliferation of deer contribute to the rise in tick-borne disease, and these problems should be addressed.

    I disagree, however, that patient advocacy has led to poor science and poor public health policy. Historically, Lyme advocates who have insisted on disease persistence have often been ignored by scholarly reviews, guidelines, and editorials, despite evidence that advocates may be correct that Borrelia persist after treatment in other forms outside the bloodstream (see Hodzic et al, 2008; Norman et al, 2008; and Miklossy et al, 2008 for 3 recent examples).

    The IDSA guidelines and insurance companies have also largely ignored the major double-blind, placebo controlled studies that suggest that long-term antibiotics contribute to severe fatigue management (Krupp et al, 2003) and pain relief (Fallon et al, 2007), and that chronic Lyme disease is not "the aches and pains of daily living" (IDSA guidelines, 2006) but rather a debilitating condition of the magnitude of congestive heart failure (Klempner et al, 2001).

    In the wake of the CT Attorney general's investigation into possible conflicts of interest and anti-trust violations, many ground-breaking articles have come to print. Is it the result of advocacy, new technologies, or the natural progress of research? Perhaps all three. But clearly, new research is validating what patients have reported all along, and advocates all over the country are welcoming thorough science, wherever it leads.

    Regards,

    Sharon Hawkes,
    http://www.lymebrary.com

  • Paul Cayer

    Obviously thsi article is biased in favor of the IDSA position that chronic Lyme does not exist and certainly seronegative chronic Lyme does not exist. As a person just diagnosed with this devasting illness after suffering its effects for 15 years, I can tell you that the IDSA position is becoming more and more absurd. They are the modern-day equivalent of the Flat Earth Society. Please read "Cure Unknown" by Pam Weintraub, and see the documentary, "Under Our Skin". There is plenty of real science in both of these.

    I would ask you to ponder how unprecedented it is for a state attorney general (Blumenthal) to interject himself into a MEDICAL dispute, a dispute over diagnosis and treatment of a disease, file suit against one of the warring factions (IDSA), and then PREVAIL. As you know, the anti-trust lawsuit was settled when IDSA agreed to reconvene the panel establishing guidelines, as well as reconstitute the panel to reflect a diversity of medical opinion. I am confident that new diagnostic guidelines will emerge from this process that do not miss up to 50% of cases.

    My own PCP, very much a "mainstream" physician, now concurs hat seronegative chronic Lyme exists, even though he had to be dragged kicking and screaming to this realization. This will happen more and more, one doctor at a time, as science reveals what thousands of patients and some doctors already know to be true. Science trumps everything, even professional jealousy, greed, and especially ignorance.

  • physician

    Dr King and infectious disease doctors who may have read Dr King's article.

    There is a small group of "lyme experts" centered on Dr Steere at Yale who have held back research on the study of lyme for almost 20 years. They persist in using an outdated testing method the IgG/IgM state patients are lyme free for their studies but ignore more advanced methods of culturing or examination of tissue by electron microscope for actual organisms. They also use circular reasoning and conclude if someone has been treated for lyme and their IgM or IgG results are positive it is a false positive. Based on this false logic there can be no persistence of the lyme spirochete in the body after treatment.

    Many people are however still infected after treatment, not only with lyme but with other diseases carried by ticks. This is slowly being proven by microscopic examination, DNA, and cultures. Unfortunately, this small group of "Lyme experts" review journal articles and grant proposals and do not permit the publication of this work or continuation of research. The also hunt down any physician who does not agree with them and treats those with persistent infections. The evidence is mounting that something is still infecting these people; their continued symptoms are NOT the result of damage done by the early already "treated" infection. I call a challenge to microbiologists and infectious Disease doctors to start examining the work of this closed group of "lyme experts". Just as the force of public opinion finally brought HIV recognition, there are more and more people living with this infection who are terribly sick and soon this groundswell will be too many for them all to be simply insane psychosomatics. Almost everyone I know has watched at least one family member or close friend whom they care for deeply, whom they have watched battle this disease in vain. Watching them suffer leaves an indelible impression. Eventually there will be too many people who recognize the persistence of this disease for this small group of “lyme experts” to continue to hold back research and treatment of this disease. Please as these “lyme experts” to step aside and let others start searching for a cure.

  • Preston Wiles M.D.

    Dr. King wants to warn us here at Yale and In Connecticut of the increasing Lyme epidemic. Ha! Thanks Dr. King! I don't know where you are from or have practiced, but last time I checked, we have plenty of coal here in Newcastle.

    You are right to point out that the epidemic is likely to increase due to deforestation, climate change, and increasing deer population. And you quote a reliable source that calls this disease one of the "deadly dozen."

    But I am not sure what the point of your article is exactly. You go on to say that there is solid scientific consensus that there is no such thing as chronic Lyme Disease, no long term sequelae. So which is it? Is it a dangerous infection we should be worried about? Or is it an easily diagnosed infection that responds completely to short term antibiotics with no long term complications or sequelae-the position of the IDSA and the researchers and scientists you refer to. So, which is it? You can't have it both ways.

    Without getting into the controversy itself, you mention the Lyme vaccine issue. If the disease is easily recognized, diagnosed and treated without significant long-term morbidity, which is the position of the IDSA, ask yourself this question: why was a Lyme vaccine being developed in the first place? Last time I checked, vaccines are only developed to prevent infections that cause significant and serious risk to large segments of a population. The folks trying to develop the vaccine were the same ones who are now trying to promulgate the view that the overwhelming majority of Lyme cases are easily recognized and treated without complications, and that the cases that aren't diagnosed and treated do not lead to serious problems. Does this make any sense to you? Why would we need a vaccine then?

    I had to laugh though when I read that you are studying communications and climate change.Communications? If so, you had better go back and edit this sentence: "Scientific expertise can contest patient advocay groups and silence policymakers by demonstrating that these groups aren't always cognizant of best treatment practices." Wow! You want to contest patient groups and silence policymakers. Really? WOW!

    I think you will soon find yourself a salmon swimming upstream on this issue Dr. King, because the shift taking place in medicine is clearly away from the authoritarian doctor-patient hierarchical relationship to one of mutual collaboration--both in individual patient- doctor interactions and in the way health care organizations and research institutions work with, shudder, patient advocacy groups.

    This week's NYTimes features a fairly scathing article about doctor's and their attitudes which is a bracing tonic for any of us who practice, but also a wonderful piece about the Michael Fox Foundation and the revolution it has created in research and patient care issues in Parkinson's disease. Oddly enough, it explains how the patients themselves, through a patient advocacy group (!), have instigated new approaches in the field and turned the research complex on its head, and by doing so completely changed the face of the field, for the better, in Parkinson's progress.

    It's not a totally new story. The same thing is happening of course with cancer with the Susan Komen Foundation and the Lance Armstrong Foundation (Go LANCE! #8), the latter of which I know a fair bit about, having been involved in its early years. And in the field in which I practice, organizations such as Autism Speaks are rightly banging their collective fists on the table and demanding that we as doctors and society do better to help their family members-in research and patient care.

    So I am confident that you couldn't really think that your piece is advancing the cause of better communication about disease and advocating that the flow of information is unidirectional from doctors, scientists and researchers
    trickling down to uniformed patients, advocacy groups, and policymakers, Could you?

    One of my first and great teachers, Donald Seldin, himself a Yale med grad, often in exasperation would remind and chide us medical students that the flow of information about disease of course always comes from and starts the patients themselves: "Doctors, please, please listen to your patients! They are trying to tell you what's wrong with them. How will you ever find out if you don't listen to them?"

  • Paul Cayer

    In ye olden days, remember when patient advocates were called DOCTORS??? Now patient advocates are the enemy????

  • Lymerix Study Participant

    As someone who was in the disastrous Lymerix Study, and in the follow-up Boster Study, I received more Lymerix vaccine than ordinary people who got the vasccine commercially in the small window of time when it was available. I suffered for six years with devasting symptoms that caused respected immunoligists at Yale to tell me I "definitely" had an auto-immune disorder, possibly Sjogren's or Lupus, and would have to learn to live with it. But the seriously debilitating symptoms have cleared. What I had was a Lymerix syndrome, which occurred in a number of vaccine recipients, especially those with the HLDR4 blood factor or those who had previously had Lyme disease.

    The vaccine was taken off the market, it's true, following the class action lawsuits. But the manufacturer NEVER admitted publicly that the vaccine was taken off the market for any reason other than absurd statements (they spent millions of dollars getting the word to physicians, and it is likely that many decent doctors simply took the bait unwittingly) about how there was in fact no real need or market for the vaccine.

    Why was this not explained clearly in this article? And why was the financial involvement in the vaccine of Yale's Dr. Robert Schoen not part of this story?

  • lymeresearchadvocate

    The scientist bows to the religion of empirisicm and clings to the dogma of his own superiority.

  • Mitch B.

    In respect to your article oddly enough it was scientists, dr.s, and so called scholars like yourself that gave no credence to cancer a century or more ago as not much was known on the subject. So when an outbreak occurs of a new disease, and the testing is inaccurate, and cures are ineffective, well I guess then we should lable individuals who complain as being problematic, anxiety ridden, or just insane.
    Sorry I don't buy into this "if we can't find it, it just isn't there" approach to medicine. The medical community as a whole practices on assumptions as to even how pharmalogical products work, without knowing truly how they may or may not effect a cure. "If the Pharmacuetical companies themselves don't know the reasons as to why many of their drugs have a cause and effect reaction ", why should we believe drs. have any idea of what their dealing with when it comes to Lyme Disease.
    Yes, Lyme Disease might be a new kid on the block type of illness. But just because it might have so many variables and off-shoots of bacterium which can effect an individual, and has yet to be understood by the medical community, should we just avoid the topic and group people with such complaints into being hyperchondriacs.
    The medical community has always been one to treat pallitively when they can, as there's so much more money involved in that. If they were to find Lyme Disease as being so broad spectrum as to be the underlying culprit in MS, Chronic Fatigue, Fibromyalgia, and an entire host of other infections, well that would take so much profit out of drs. pockets, should a conclusion be brought forth and an overall cure be found.
    Seems we might have a conflict of interest effect here in actually trying to cure an illness which might be causing a wide variety of ailments. There's just too much money in not recognizing it. So yes, better the medical community just say it doesn't exist!

  • Thor Skogkaat

    We have been creating "habitat" called National Wildlife Refuges which are nothing but sanctuaries for rats with antlers, beavers, mosquitoes, ticks, etc. And then we are upset when we "discover" those refuges are breeding grounds for the carries of Lyme, EEE, West Nile, etc.

    I guess humans are the most stupid species on the planet.

  • Lover of Love

    Thank you YDN! What a wonderful Christmas editorial.

    Very classy.