The Lyme Disease Webring


This ring links together sites that contain information about Lyme disease and other tick-borne illnesses. It was created as an information resource to increase the awareness of this insidious disease.
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Lyme Disease


I got bit by a tick and I'm freaking out ... red circle size of a quarter. Should I go to a doctor?


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2009 Final Report's Proposed Changes to IDSA Lyme Disease Guidelines



I decided to take a break from discussing The Lancet antiscience letter and highlight a few items of note about proposed upcoming changes to the Infectious Disease Society of America's 2006 guidelines for the treatment of Lyme disease. Below is a list of some Lyme disease guideline items and recommendations for their revision taken from the 2009 Final Report [.pdf] that the Infectious Disease Society of America (IDSA) review panel wrote in response to Senator Blumenthal's antitrust investigation of the IDSA a few years ago. In this report, an independent review panel came to the conclusion that several changes needed to be made to the 2006 guidelines which would be included in the next version of the guidelines (which has yet to be published). I have provided a table from the original final report which outlines what the quality of the evidence is which supports each recommendation and the strength of each recommendation, based on the IDSA review panel's judgment. Following that table, I have provided a more detailed table which takes portions of the original 2006 Lyme disease diagnosis and treatment guidelines (which are more or less identical to the IDSA's 2000 treatment guidelines for Lyme disease with few exceptions) alongside the recommendations of the 2009 panel for the next version of the IDSA guidelines. I provide this information, along with a few questions for readers: The state of the science in Lyme disease has been moving along at a fair clip, and with more case...

2009 Final Report's Proposed Changes to IDSA Lyme Disease Guidelines


Lyme disease pseudoscience and science: The antiscience letter



When I first read this Personal View paper, " Antiscience and ethical concerns associated with advocacy of Lyme disease ",  a truncated version was making the rounds between patient mailing lists and online groups. I didn't yet know what the full version contained, and given that the truncated version was high on accusation and negative characterization of Lyme disease advocates and low on science and attribution, I could do nothing but rant at it. The full text was (and continues to be) officially behind a paywall, so most patients have not seen the full version unless they sought out alternative links, such as this site's copy (pdf) posted by Dr. Susan O'Connell , who was a co-author of the letter. One of my ongoing complaints about paywalls is that disabled and often financially challenged patients cannot afford to pay for 24 hours access to a paper about an issue which concerns them or is about their medical condition. Another issue is some patients have cognitive issues including short term memory problems, so even if they have the money, they need more than 24 hours access to a paper. But when it comes to this particular paper, I think most Lyme disease patients would give it a pass when they read it and realize that the authors' focus is on criticizing the organizations which have served and represented them for years. But I digress… Now that I've read the full text more than once, I'm left in a difficult position in how to respond to this paper as a patient wh...

Lyme disease pseudoscience and science: The antiscience letter


Introduction: Lyme Disease Science And Pseudoscience



When I began this blog, part of it was in response to The Chicago Tribune 's article, "Chronic Lyme: A dubious diagnosis". And while I did a fair deconstruction of it of my own, I think Paul Raeburn's original comment on the piece pretty much captured my opinion, too: "Again and again, Callahan and Tsouderos give far more space to advocates making questionable claims than they do to experts who refute those claims, allowing the serious case for chronic Lyme disease, whatever that might be, to be buried under the dubious claims of advocates. The reporters go on and on impuguning patients and advocates without ever telling us whether there is a debate among legitimate experts about whether Lyme disease might assume a chronic form." Raeburn's remarks did not go without criticism from others. Orac, of Respectful Insolence blog, pointed out that Raeburn was demonstrating that he supported false balance in reporting - that as long as the evidence against chronic Lyme disease outweighed the evidence in favor of it, there was no way to give it equal time. (More on this in a later post.) Since reading the Tribune article, I've read a number of articles, blogs, and editorials which questioned if not denied the existence of chronic Lyme disease, such as Hoofnagle's Denialism blog entry on chronic Lyme being a fake disease ; White Coat Underground's "Lyin about Lyme" entry; The Lippard Blog's "Science-based Medicine Conference, part 5: Chronic Lyme" ; "A Critical Appraisal of Chronic Lym...

Introduction: Lyme Disease Science And Pseudoscience


Part Two: How A Skeptic Ended Up Seeing An ILADS Doctor



In the first installment of this series, the circumstances which gave rise to my seeing an LLMD were outlined. Having issues getting proper diagnosis and treatment for an early acute case of Lyme disease, the inability to secure a referral to an infectious disease specialist, a referral to a doctor from local Lyme disease support groups, and being incredibly ill all led to my first visit with an LLMD. In today's installment, I'll talk about how I decided to take antibiotics long term, how the Lyme disease patient community became part of my life, and the inner conflicts which have arisen by being a patient with my condition. On Being A Somewhat Different Chronic Lyme Disease Patient Unlike the majority of chronic Lyme disease patients who were surveyed, I did not have to see many doctors before my diagnosis. And unlike the majority of chronic Lyme disease patients, I still felt like modern medicine worked pretty well for me up to that ...

Part Two: How A Skeptic Ended Up Seeing An ILADS Doctor


Part One: How A Skeptic Ended Up Seeing An ILADS Doctor



Early November 2012, the International Lyme and Associated Diseases Society - also known as ILADS - held their annual conference in Boston, Massachussetts. Due to the incoming frankenstorm, Sandy -  and other reasons - I did not attend the conference. Instead, I joined hundreds of viewers in watching a prerecorded version of different ILADS conference presentations on livestream last weekend. I was originally going to give my own bullet summary about each of the conference presentations I viewed - but I think that if you are interested in what each of the presenters had to say, it's best to view a replay of their presentations during the next two weekends and view their slides on the ILADS website. It is going to take me a long time to write on the presentations I intend to single out. (I did write a quick overview of my initial impressions of the streamed video feed on a thread on Lymenet Europe, and that - along with other confe...

Part One: How A Skeptic Ended Up Seeing An ILADS Doctor


Placeholder: ILADS 2012 Conference Remarks



Coming soon... ILADS 2012 Conference Remarks - watch this space. This work by Camp Other is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 3.0 Unported License .

Placeholder: ILADS 2012 Conference Remarks


Late November Newsletter From Camp Other



There are a few announcements I'd like to make today... For those of you who are here for the first time, via Twitter: Welcome to Camp Other blog. I'm glad to see you here, and I look forward to having interesting discussions with you both here and on Twitter. Whether you are new to this blog or a returning visitor, the following announcements may help you make sense of what's been happening here at Camp Other blog: An Effort to Change Writing Style and Reporting Joining Twitter is a recent move I made in the past couple of weeks in order to pick up more great writing on science and links to posts from science bloggers. In some ways, this is great because I'm learning more, and I recommend following those I follow because there are a lot of interesting articles out there. But in other ways, this is a humbling experience because there are so many good writers out there - and once I've read them, I can't help but notice there is room for...

Late November Newsletter From Camp Other


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 sig...

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


Lyme Research Alliance Response To Reporting On Reinfection Study



The Executive Director of the Lyme Research Alliance responded to the New York Times' article, “ New Infection, Not Relapse, Brings Back Lyme Symptoms, Study Says ” which refers to the Lyme disease reinfection study recently published in the NEJM: "Once again, chronic Lyme disease sufferers are not getting a break. You base your article on a New England Journal of Medicine study concluding that recurrences of Lyme occur as a result of new tick bites, not a recurrence of the original infection. While we understand that your article was based on The Journal’s report, there’s a disconnect in your inferred conclusion. The tiny 17-person study did not address cases of recurring Lyme where the characteristic bull’s-eye Lyme rash is not present and no evidence of a second tick bite exists. Lyme-literate doctors see many such cases. This limited study supports the theory that Lyme is effectively treated by one short course of antibio...

Lyme Research Alliance Response To Reporting On Reinfection Study


What Does The Reinfection Study Have To Do With Chronic Lyme or Post Lyme Disease?



Last week, a number of media outlets wrote articles referring to a study published in the New England Journal of Medicine (NEJM), "Differentiation of Reinfection from Relapse in Recurrent Lyme Disease". Since I wanted to see what was actually stated in the study, I acquired a copy of the full text of this publication to see for myself why the authors might have given some journalists the impression that chronic Lyme disease - or even post Lyme disease syndrome - does not exist. Side note: One important thing to know is that at the time I wrote this entry, I had not read the accompanying editorial by Dr. Steere which was published in NEJM. Given that the current entry was written based only on the study itself and has gotten quite lengthy, I will be writing separately about the editorial in the future. Summing it up After reading through the paper, if I had to give a one sentence summary of what this study accomplished, this sentence at...

What Does The Reinfection Study Have To Do With Chronic Lyme or Post Lyme Disease?


CO Comments on 'The Pseudoscience of Chronic Lyme'



During the weekend, Ed Yong, who writes for Discover magazine's Not Exactly Rocket Science blog, of alerted me on Twitter to Cassandra Willyard's blog post on The Last Word on Nothing blog - "The Pseudoscience of Chronic Lyme" . Not wanting to pass up the opportunity to comment on some journalists' bungling of how to interpret the significance of the New England Journal of Medicine (NEJM) published study, Differentiation of Reinfection from Relapse in Recurrent Lyme Disease , I decided to stop by and read what Cassandra and others had to say and leave a few comments. So far, commenters are asking good questions and pointing out some logical oversights in what we have read, which is constructive. I don't know that I recommend it for casual reading for a number of chronic Lyme disease patients, though - particularly if you are in a headspace where you are currently very angry about your condition being treated dismissively and can't hold...

CO Comments on "The Pseudoscience of Chronic Lyme"


Do Not Conflate Reinfection With Absence Of A Chronic Condition



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 finding are is 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 s...

Do Not Conflate Reinfection With Absence Of A Chronic Condition


New Lyme Disease Detection Test For All Stages Of Infection



For all those observing today: Happy Carl Sagan Day ! For everyone else: Happy New Lyme Test Day! I say this because today a new blood test for the detection of all stages of Lyme disease has been launched. In a press release , Boulder Diagnostics reported the European market launch of the CE marked SpiroFind in vitro diagnostic test for the detection of active Lyme Borreliosis. The makers of the novel SpiroFind test claim it can detect active Lyme Borreliosis through all stages of disease from early disease to late and persistent manifestation. The test is based on measuring the cellular immune response to a specific challenge with the Borrelia organism. The effectiveness of the SpiroFind test was confirmed in a clinical study at the Radboud University* Nijmegen Medical Centre, which is submitted for peer-reviewed publication and for presentation at the ECCMID conference in Berlin, Germany in April, 2013. “We are proud to offer this...

New Lyme Disease Detection Test For All Stages Of Infection


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