"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.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.)
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."
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 Lyme Disease"(NEJM); "Chronic Lyme disease: In defense of the scientific enterprise"(FASEBJ); "Antiscience and ethical concerns associated with advocacy of Lyme disease"- and more.
I read them because wanted to find out why people had doubts about chronic Lyme disease - and what, if anything, they would say about an alternative hypothesis for patients with persisting symptoms - namely post-Lyme disease syndrome, an autoimmune-like disorder triggered by Lyme disease.
Far as I could see, most blog posters and many of their commenters made no mention of the scientific evidence that some patients who contract Lyme disease do in fact go on to experience persisting symptoms - while many editorials and journal publications at least acknowledged this fact.
To quote Dr. Paul Lantos of Duke University, who wrote about chronic Lyme in "Chronic Lyme disease: The controversies and the science"(full text here):
"It is well-established that some patients experience prolonged somatic or neurocognitive symptoms during convalescence from Lyme disease, and a subset suffer significant functional impairment. Whether this phenomenon occurs frequently or rarely, and whether it is caused by persistent infection with B. burgdorferi, lie at the heart of the often acrimonious controversy over what has been termed ‘chronic Lyme disease’."This is me. I am part of "some patients". I had a tick bite, developed an erythema migrans or bull's eye rash, and a positive blood test for Lyme disease. I have a history of being significantly functionally impaired. I have taken antibiotics - and even took more than was advised under the IDSA's treatment guidelines. I have tried prescription pain medicine and other treatments for my symptoms.
Yet I still suffer, and as a patient one of the problems I face is that a lot of negative media press, blogs, and articles not only deny chronic Lyme disease's existence but also neglect to mention that there is scientific evidence that some patients who contract Lyme disease develop prolonged symptoms after initial treatment.
To give Orac on his Respectful Insolence post some credit, when he wrote about the dubious diagnosis article in The Chicago Tribune he did say:
"Don’t get me wrong. Lyme disease is real. There does even appear to be a post-Lyme disease syndrome, which is seen in patients who had Lyme disease and now have chronic symptoms (such as fatigue, various pains, and difficulty concentrating) after having been treated. Indeed, this is even referred to as category 4 Lyme disease. What causes this syndrome is a mystery, and there is no doubt that there are patients out there with debilitating symptoms after being treated for Lyme disease, but current scientific and clinical evidence does not support the idea that these symptoms are due to a chronic ongoing infection or that prolonged courses of antibiotics do any good."And a commenter on that post, Kyle, also said something which hit home for me:
"When it comes to the advocacy surrounding the disease, it can be difficult to separate those that are truly sick with tick-borne disease, and those that seek the diagnosis of Lyme disease to explain their symptoms. Unfortunately, for this reason, I believe the truly ill may be simply ignored.These two at least acknowledge that yes, there are patients with tickborne diseases who suffer from them and also those who suffer with persisting symptoms after initial treatment - though unlike most patients and their advocates, they disagree that symptoms can arise from a chronic infection.
We also have to take in account that there are many other pathogens that can be transmitted from a tick that have symptoms that resemble that of Lyme disease, and it’s not uncommon for an infected individual to receive multiple infections at the same time."
But getting back to it: Let's say for the sake of argument here it's firmly established I'm an individual who became truly sick with a tickborne disease, took antibiotics, and continue to have symptoms since the fateful day I was bitten.
The person in my situation is faced with a dilemma, when it comes to knowing what to do once the symptoms acquired during infection do not go away - especially after treatment. Not after a week. Not after a few months. And not after years.
Given my history of being a skeptic, I initially hoped that reading what other skeptics had written would be useful. I thought it would challenge me to think and inform me with facts about Lyme disease and other tickborne diseases I hadn't known before.
Surely, I thought, they would have gotten deep into an explanation of Lyme disease's pathogenesis and explained the mechanisms behind my condition and provided evidence as to why chronic infection wasn't a viable cause for my symptoms. And I thought they would have educated me and others on not only Lyme disease and chronic Lyme disease - but on Post Lyme Disease Syndrome and how it occurs.
This is not how things turned out, though. I've read pretty much all the skeptics' blog posts and critical editorials on chronic Lyme disease that I can get my hands on, thinking I could learn something from them - only to realize three things about them:
- They don't typically offer enough detailed weighing of the data to show how those who do not support the existence of chronic Lyme disease came to their conclusion.
- Most do not even mention the concept of post-treatment or post Lyme disease syndrome; those that do, do so briefly and offer no advice on how to handle it.
- They don't help patients in my situation with ideas on how to get better.
And from a scientific perspective, there has been little actual discussion from skeptics about which lines of research could be pursued next which could help someone in my shoes. There is little detailed discussion of the specifics of why precisely it is that the authors and commenters reject the idea that Borrelia burgdorferi - as well as any other Borrelia or tickborne pathogen - might persist in its host.
The conversation never gets that far. I was hoping it would. But mostly, skeptical people have chosen not to engage me on this topic even though I myself have been a skeptic and question many things.
There has been nothing to learn there, so I began my own line of inquiry and began doing my own research on my condition once my brain began working well enough to read again. And instead of skeptics, I have turned to other patients for support during my illness who commiserate with what I'm going through - patients who mostly support a model of chronic and persisting infection of Lyme disease - though a few also wonder if something immune-related or autoimmune might be contributing to their symptoms as well.
I know when I talk to another patient that I will have someone in my corner who understands what I'm going through; it's one small consolation for dealing with a difficult condition. We can share ideas with each other about what kinds of treatment we've experienced and our outcomes, and sometimes there is a useful gem to be found there which when acted on will make our lives better.
For those who are skeptical about having a chronic infection and/or truly think their situation is post-infectious, it should be noted that there are no "post Lyme disease syndrome" support groups. Googling "post Lyme disease support" will redirect you to any of a number of friendly and welcoming sites informing you about chronic Lyme disease. (To the skeptical, go ahead and open a new browser window and try it. I'll be waiting for you right here until you get back.)
Given this, if you think dealing with chronic Lyme disease on its own is hard enough, when you think you have a newly acquired autoimmune condition that was triggered by Lyme disease it becomes even more challenging to find information and support. You might find your answers in a few isolated forum posts where patients bring up the issue of developing hypothyroidism or a case of antiphospholipid syndrome after contracting Lyme disease.
This situation is slowly changing, though, as more patients acknowledge that alongside infection, immune factors in general can play a role in their condition, and advocacy groups fund research on novel treatments for chronic Lyme disease such as VG LifeSciences VGV-L.
It seems to me that most patients give up on interacting with those who are skeptics of chronic Lyme disease and stick to mingling with those who do not question their condition in any way. It's understandable to withdraw and be self-protective when there is so much suffering - especially since all some skeptics seem to want to do is tell patients our symptoms are "all in our heads" without really knowing a damn thing about us. Since this is not the sort of feedback anyone needs when we are genuinely struggling with a chronic illness, those who deny the reality of our condition are usually avoided.
However, I'm not fully avoidant. I'm more confrontational, and I've never been "most patients" because I've had one foot in the world of the skeptic and have continued to question the nature of my own condition. Could what I have really be a chronic infection? Is it something else? Or is it a combination of things from which I suffer? I periodically visit and revisit the writings of those who are skeptical of either the existence of chronic Lyme disease or its hypothetical cause to see if there is anything new to learn... Something. Anything.
In the end, I'm not always sure where to turn when coming from this space. I ask the questions many patients ask, such as, "What is the truth about Lyme disease?", "What exactly is the best thing for me to do as an individual, based on my condition?", and "Is there any external auditor who can look at all the information about Lyme disease that is out there and give me a straight answer about it?"
In the end, are there any clear answers?
I offer all of the above as an introduction for what I plan to discuss in the coming days and weeks on this blog: The issue of skepticism around chronic Lyme disease, how the science and pseudoscience of Lyme disease has been discussed online and in journals, and a meta-discussion of how a patient approaches these discussions with the kinds of questions a patient like myself might be inclined to ask.
This is no minor undertaking. As a patient, I am always drowning in information about tickborne diseases and trying to make sense of it while simultaneously having to understand and fend off criticism from individuals who and organizations which don't even know me and don't understand my condition. They treat me as some vague data point or offer up a two-dimensional stereotypical patient when I'm a real human being living a three-dimensional life full of daily struggles.
Somehow, there has to be a way to address being in the situation in which I find myself. Somehow there has to be a way to break out of this box which has been imposed on me and add another dimension.
Antiscience and ethical concerns associated with advocacy of Lyme disease" (full text here) because in a very real way, the statements within affect the way society not only looks at a condition such as chronic Lyme disease but also how it looks at and characterizes the patient population which is suffering from the condition.
As a patient, I'd like to give a face to and a voice to a condition which - while hotly contested in terms of cause - is definitely real to me. And I intend to question and discuss the criticisms and skepticism offered in a logical and methodical way. Stay tuned to take that journey with me.
Photo credit: Tim Houlihan
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