To Each His Own Summit

I had the opportunity to speak with Ed Webster, who had climbed Mount Everest, including an assault without oxygen or sherpas, in the 1980's. We talked for awhile about his climbs, the last of which resulted in the loss of several fingers and toes, due to a moment of taking off his outer mittens to take a photograph. It called to mind how often the punishment does not fit the crime in life.

Ed is now living in Maine, and we got to talking about Lyme disease. He was truly moved to hear about a family member of mine who has struggled, and mentioned that he had two friends who have also been afflicted. This man, who has had to completely work around his own physical loss, and I'm sure is reminded of it daily, had compassion for others who struggled daily with a disease. We shook hands, we hugged, and I am a little more thankful for the things that I have today.

Happy Independence Day.

Webster, Ed. Snow in the Kingdom: My Storm Years on Everest. 2000

The Heart of Healthcare

With all the interest in healthcare reform these days, I found this quote from the Annals of the New York Academy of Sciences in 1994 most interesting. It was written by Robert O'Brien, CEO of Empire Blue Cross and Blue Shield of New York. He writes:

The art of medicine as practiced by the excellent physician is not just the recall of technical data from medical texts and journals. It is the synthesis of this information, the power of deductive reasoning, and the skill of active listening in a physician-patient encounter. The excellent physician has the intelligence, intuition, and interpersonal skills and respect for the patient that no battery of tests or detailed medical records or clinical protocols can replace. When the physician brings all these attributes to the encounter, medical quality outcomes can then be measured: early and accurate diagnosis, appropriate medical treatment, effective use of resources, and continuity of care after the initial encounter.

Cost-effective medicine is bound by excellent physicians knowing their patients. And superceding cost-effectiveness is successful outcome -- the patient is healed -- also bound by knowledgeable healthcare practitioners knowing the science and knowing the patient.



O'Brien, R. (1994). The doctor-patient relationship. Beyond the Crisis: Preserving the capacity for Excellence in Health Care and Medical Science, Annals of the New York Academy of Sciences 729, 22-26.

Science, Bent

Thomas O. McGarity and Wendy E. Wagner wrote Bending Science: How Special Interests Corrupt Public Health Research, to describe how scientific research can be corrupted before, during, and after the study is designed and completed in order to skew the results toward a particular point of view. Unfortunately, it is difficult for judges, legislators, and the public to tell when medical studies, reviews, and guidelines are being manipulated for a biased purpose.

The authors describe how research can be bent:

Shaping Science -- ..."Commission research designed to
produce a particular outcome"

Hiding Science -- "suppress the unwelcome
findings"

Attacking Science -- "launching ilegitimate attacks on
damaging research"

Harassing Scientists -- "a full-scale assault on the
integrity of the researcher"

Packaging Science -- "commissioning review articles that
purport to summarize existing research on a topic but... portray existing
research in the light most favorable to the sponsor."

Spinning Research -- "portraying damaging research as
'fatally flawed'...to generate pressure on decision-makers to discount
it." (p. 39-40)

The authors recognized that big business and advocacy groups could both be at fault for bending the science to meet their pre-conceived ideas. When looking at Lyme medical information, we have to constantly ask, Who is telling me this? How do they know this? Do their definitions of the disease and its treatment fit with what is known?

When presented with the facts, we need to adjust our thinking, not the data.


McGarity, T.O. and Wagner, W.E. (2008) Bending Science: How Special Interests Corrupt Public Health Research. Cambridge, MA: Harvard University Press.

Paul Farmer on Infectious Diseases

Pulitzer Prize-winning author Tracy Kidder wrote Mountains Upon Mountains in 2003, tracing the work of Dr. Paul Farmer, anthropologist and epidemiologist, winner of the MacArthur "genius grant," who has worked with some of the poorest patient populations in the world, as well as some of the most prosperous in Boston.

Statements made about tuberculosis treatment in the book are most interesting.

From Chapter 13:

Meager incomes don't guarantee abysmal health statistics, but
the two usually go together....One-third of humanity, have TB bacilli in
their bodies, but the disease tends to remain latent. It multiplies into
bone-eating, lung-consuming illness in only about 10 percent of the
infected. The likelihood of getting sick increases greatly, though, for
those who suffer from malnutrition or various diseases...

Though I wouldn't necessarily equate Lyme patients in the US with Tuberculosis patients in Haiti, a few similarities are present. Both diseases seem to be latent in many patients, coming out due to malnutrition or coinfection. (Many Lyme patients seem to lack vital nutrients, perhaps due to the infection itself.) And with Lyme patients unable to get diagnosed or treated, due to our healthcare system and the disbelief in chronic Lyme, Americans are often healthcare poor when it comes to Lyme disease.

What is the answer? In Haiti, the answer to TB is antibiotics. When the disease is resistent to a single course of one antibiotic, then multiple stronger antibiotics are given, for as long as two years.

So what is the answer for Lyme patients?

Kidder, T. (2003). Mountains upon Mountains. NY: Random House.

Those pesky healthcare advocates

In the college paper, the Yale Daily News (12/3/08), Leslie P. King, MD PhD wrote an article critical of Lyme advocacy groups, entitled "Watch Out for Lyme Disease," in which she wrote:

"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."

My reply:

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.

(See also an excellent reply from Yale Associate Professor Preston Wiles, MD on the importance of patient advocacy groups.)

The Medium is the Message

Marshall McCluhan made famous the phrase, "The medium is the message," meaning that the way by which a message is sent is as important, if not more important, than the message itself. In the news media, for example, a headline article "above the fold" on the front page of a newspaper is deemed to be more important than if that same article were buried in the B section on page 9. How often a topic is covered also contributes to how important we perceive it to be.

A study called Medicine in the Popular Press: The Influence of the Media on the Perception of Disease demonstrated that students consistently ranked diseases that had media exposure as more severe than lesser-known diseases with similar symptoms. Students ranked Lyme disease as more severe than babesiosis, even though they are both tick-borne and were described with similar symptoms.

The researchers wrote:

...individuals will consider high media frequency disorders to be more serious and pose more of a threat than equally serious underrepresented infectious diseases.... Given the results presented in this paper, it is imperative that we fully understand the effects of the media on public perceptions of disasters and disease epidemics. In this age of television and internet media it is important to consider the impact of media reporting on public perception of risk, and public health in general...

West Nile Virus strikes fear when it is mentioned, but Lyme often does not. Yet West Nile Virus occurs much less often than does Lyme, and both can be severe or even fatal. Does that mean that West Nile should not be mentioned? No, but by keeping Lyme in the public eye, people may take it more seriously, seek treatment sooner, and pay attention to prevention strategies.

The Patient-Doctor Partnership

There are two very different skill sets at a typical primary care visit:

• the doctor's skill set: a huge overview of many body systems and body types, and experience with many common presentations of disease, and probably several unusual ones
• the patients' skill set: varying amounts of understanding of the human body, but a good understanding of what is normal and not normal in their own bodies

What may be missing in this scenario is very specific information about the specific symptomology the patient is experiencing. If the symptoms cluster points to something common, or something the clinician dealt with before, no problem. But what if it belongs to something less common, such as late-stage Lyme disease?

In emerging diseases, where research is still ongoing, it would be impossible for every doctor to keep up with every new finding on every disease. Even specialists have their sub-specialties. But patients have only one set of symptoms to understand -- their own. If they are healthy enough and literate enough to research their own symptoms, they can assist in their own diagnosis.

But patients have more than ever to gain by decoding the latest health news and researching their own medical care.

“I don’t think people have a choice — it’s mandatory,” said Dr. Marisa Weiss, a breast oncologist in Pennsylvania who founded the Web site breastcancer.org. “The time you have with your doctor is getting progressively shorter, yet there’s so much more to talk about. You have to prepare for this important meeting.”

There is the potential for a new model of patient care, where decision-making is transparent and both sides contribute information, and the final decision is left to the patient.

“We need to help them sort through it, not discourage the use of information,” he said. “We have to acknowledge that patients do this research. It’s important that instead of fighting against it, that we join them and become their coaches in the process.” -- Dr. Shalom Kalnicki, chairman of Radiation Oncology at the Montefiore-Einstein Cancer Center

Parker-Pope, T. (2008, September 29). You're sick. now what? knowledge is power [Electronic edition]. New York Times. Retrieved October 12, 2008 from http://www.nytimes.com/2008/09/30/health/30pati.html?ref=healthspecial