Lyme disease, science, and society: Camp Other

Friday, November 30, 2012

2 A Pocket Review of Dr. Steere's NEJM Reinfection Editorial

I finally had the opportunity to sit down and read Dr. Steere's editorial which accompanied Nadelman et al's study, "Differentiation of Reinfection from Relapse in Recurrent Lyme Disease".

Before I comment on the editorial, I want to acknowledge the research which was accomplished in the study as it deserves more attention.

I think it was an interesting study on two counts:

One, it showed that in a group of 17 patients, it was highly unlikely that a patient would get reinfected with the same genotype of Borrelia burgdorferi compared to one with which they'd previously been infected. Does this suggest that patients have some form of immunity to specific genotypes - or is this a reflection of random chance of infection with specific genotypes?

Two, it provided evidence in two patients that a person can be infected with one genotype of Borrelia burgdorferi in skin - while an entirely different genotype can be found in the blood. The significance of this has yet to be determined, but it does raise some interesting questions about the nature of Borrelia burgdorferi infection. How often are patients coinfected with different types of Borrelia burgdorferi? Are these genotypes competitive in any way? Can one genotype affect a patient more profoundly than the other? If there is a delay in treatment, can one genotype be more effectively treated than another?

The findings from this study inspire curiosity and more questions about the nature of Lyme disease.

Thoughts on the editorial, "Reinfection versus Relaspe in Lyme Disease"

Now that I have acknowledged two interesting findings from the Nadelman reinfection study, I have to say that unlike the connections made by Dr. Steere, I do not see the relationship between data presented in this study and patients who have been infected with Lyme disease and continue to have persisting symptoms after initial treatment.

Any good study and its findings stand on their own and an editorial on them by the authors themselves is usually unnecessary. The work should speak for itself, and I think this study does well to demonstrate a relationship between the presence of new genotypes and reinfection in a small group of patients who were bitten by ticks in the same geographic location.

If there is an editorial accompanying research, it should in some way enhance or broaden our understanding and appreciation of the findings - and by extension, lead our curiosity to new horizons.

Unfortunately, Dr. Steere's editorial is not additive in nature. It does not add nuance to or a greater appreciation of the reinfection study - nor does it address the kind of questions raised above which directly apply to his study. Instead, his editorial seems to stretch the findings' significance in order to provoke discussion on chronic Lyme disease based on claims that a small percentage of patients' erythema migrans rashes have been thought to indicate a relapsing infection.

References
Robert B. Nadelman, M.D., Klára Hanincová, Ph.D., Priyanka Mukherjee, B.S., Dionysios Liveris, Ph.D., John Nowakowski, M.D., Donna McKenna, A.N.P., Dustin Brisson, Ph.D., Denise Cooper, B.S., Susan Bittker, M.S., Gul Madison, M.D., Diane Holmgren, R.N., Ira Schwartz, Ph.D., and Gary P. Wormser, M.D. Differentiation of Reinfection from Relapse in Recurrent Lyme Disease. N Engl J Med 2012; 367:1883-1890November 15, 2012DOI: 10.1056/NEJMoa1114362
Allen C. Steere, M.D. Reinfection versus Relapse in Lyme Disease. N Engl J Med 2012; 367:1950-1951November 15, 2012DOI: 10.1056/NEJMe1211361

ALSO, to read my detailed report on the Nadelman reinfection study, see:
http://campother.blogspot.com/2012/11/what-does-reinfection-study-have-to-do.html

2 comments:

  1. So sorry to learn about your setback. I hope you get some answers soon. As for bias, certainly Steere and colleagues are very biased. At least you are aware that you might be biased and try to fight against it.

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  2. Hi Anonymous 3:16 PM,

    Thank you for your comment. I don't know if you originally intended to comment here or to my late November newsletter, but I willl respond here.

    It's been been a few years of persisting symptoms since I contracted Lyme disease and babesiosis. The severity of my symptoms was worse in the past than it is now, but I'm still having problems which interfere with living a normal life.

    I hope I get some answers, too. I'm trying to find my own answers here - and beyond that strategizing is needed to get more research and answers for everyone in my situation. It's more difficult to do when one is not well - and often what slows a number of people down in my situation.

    Regarding bias, I want to try to look at all the Lyme disease research I can out there and not leave stones unturned. It's hard because there is SO MUCH research out there, so much ground to cover, so much to learn - and Borrelia burgdorferi is a complex organism which interacts with our immune systems in unique ways.

    How do you know where to start? I began where I was, as a patient who learned all about chronic Lyme disease because my treatment was delayed and I moved to a more advanced stage of infection. As time went on, I decided I'd be willing to read more about the autoimmune hypothesis about persisting symptoms and see if it had the evidence to back it. Now, years later, and the big picture is even more complex than I imagined; it looks like the chronic infection/immune response dichotomy I came into thinking was the case as a Lymie is a false dichotomy.

    Steere... I can read Steere's research and take it at face value, same with Nadelman's. But I have issues when I hear about and read about the attitude which Steere has towards patients - including his attitude and negative characterization about chroniic Lyme disease patients during a presentation he gave to family doctors a couple years ago - and I find it egregious behavior. It's that attiude and characterization that puts him squarely in the negative side of the balance scale because he is not fairly representing patients nor doing work which would be healing. It's tearing people down who are already in a bad place.

    From a professional standpoint, researchwise, the work Steere has done on Lyme disease is what gave him job security in rheumatology - but Lyme disease is so much more than a rheumatological disease. It's a systemic disease, and depending on a number of factors can be very invasive. It's this side of Lyme - the systemic and neurological side of Lyme - that I wish Steere and others would give more acknowledgment.

    And I think that side of it is where research should be focused... I mean, personal perspective here: What would you rather put up with - arthritic knee joints or cognitive problems, paresthesia and stabbing pain, disordered sleep, and chronic fatigue? I know what my answer is, and it's screwed up knees, hands-down. Instead, I've had to deal with both. Go me, right?

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