It's been a busy day for Lyme disease in the media today. And for me, too, as I have been trying to do some education (translation: damage control) regarding the inaccuracies which were reported concerning the findings from small study on Lyme disease that was recently published in the New England Journal of Medicine (summary only; full text behind pay wall).
With a sample size of 17 participants, the study advanced the idea that most patients who have new erythema migrans (also called "bull's eye") rashes have been reinfected and do not have a previous relapsing infection. Bacteria sampled from the new rashes and run through PCR do not match bacteria from old rashes from a previous infection - therefore, patients have been reinfected.
In and of itself, these findings are not problematic. And they make sense, knowing what is known about EM rashes and immune responses to Borrelia burgdorferi. It is only one small study, and I don't see it as earth shattering nor does it tell anyone everything there is to know about Lyme disease.
But what follows is problematic: A number of online news articles stated that this outcome provides evidence that Chronic Lyme Disease and (unwittingly, in some cases either implied or by extension) Post Lyme Disease Syndrome do not exist.
Now, while most Lyme disease patients with persisting symptoms support a chronic infection model, there may be some people who develop an autoimmune condition such as Post Lyme Disease Syndrome due to having had Lyme disease. I simply don't know, and think more research is required on this subject. But either way, the conflation of this small study's findings with the nonexistence of a chronic condition is erroneous.
Even by the IDSA's standards, some interpretations of Dr. Allen Steere's editorial which accompanied the study (briefly blogged about here on the NEJM) seemed to get it wrong. On one hand, Dr. Steere acknowledges persisting symptoms and he states that "infection-induced autoimmunity, retained spirochetal antigens, or both may play a role in this outcome." And on another, a number of journalists seemed to gloss over this statement and not mention it - alongside stating or implying that a new, acute infection is the only reason patients get ongoing or new symptoms.(Um, late stage untreated neuroborreliosis, anyone? Coinfections? These things can happen on occasion...)
This is incorrect, and so I've tried to correct this inaccuracy in reporting by responding to media outlets online. I've spent a good part of today looking online for articles which I could respond to about this issue, and noted that several news outlets and online magazines either do not allow comments on posts related to this topic or require one to post comments using Facebook and other services which not everyone uses. But I posted to as many places as I could, and wrote more or less the following comment in most locations:
"This is one of several articles I have seen which conflates this study on new rashes and new infection with the issue of chronic Lyme disease or persisting post-treatment symptoms - when the two issues are distinctly separate ones.
Even if one does not believe that Lyme disease can be a chronic infection (which in the scientific world it continues to be a matter of debate if a study like Dr. Embers' Persistence of Borrelia Burgdorferi after antibiotic treatment in Rhesus Macaques has been published recently and the NIH-NIAID is funding a xenodiagnosis study to see if human hosts with chronic Lyme disease can pass their infection onto lab-raised ticks - hardly a sign the debate has been resolved), the IDSA itself recognizes that a percentage of patients who were treated for Lyme disease go on to have persisting symptoms for months to even years after initial infection. Their organization thinks it is possibly autoimmune and call it Post-Lyme disease syndrome; there are now proteomics studies that have been done which provide markers for this condition.
Whichever model of persisting symptoms you support, it is incorrect to associate this one study with disproving the existence of either a chronic infection or post-infection autoimmune condition in patients with ongoing disease and disability since contracting Lyme disease.
I think that one also has to be careful about the utility of the EM or bulls' eye rash in proper diagnosis of Lyme disease in general: According to Dr. Jorge Benach of Stonybrook University, if more satellite rashes erupt after the initial rash (usually within weeks to months) the infection has disseminated. Also, not all cases of Lyme disease present with an EM rash, and research by Dr. Benjamin Luft has shown that some strains of Borrelia which disseminate with a rash do not cause disease and some without rashes do cause disease.
One study like this is not enough to set the course for Lyme disease, which is an emerging infectious disease which requires more research."
In other words, as it bears repeating: The rash is not the disease.
I really don't know what else I can say in response to these articles. I've made my point where I can, short of writing letters to the editor.
Other than this, of course, I recommend responding in your own way to these articles online and cite research that has been published or is currently in progress on Chronic Lyme Disease, Post Lyme Disease Syndrome, or both. And if you're a patient, inform people about the science that is out there and let them know you are in the 10-20% of patients who has persisting symptoms after initial infection with Lyme disease. You exist. Your condition is real.
This work by Camp Other is licensed under a Creative Commons
Attribution-NonCommercial-ShareAlike 3.0 Unported License.