10 Commentary On Chronic Lyme Disease and Skepticism

When I began writing this blog, I originally wrote it to give a point-by-point analysis of how one article in the Chicago Tribune, "Chronic Lyme: A dubious diagnosis", did not address the issue of whether or not Lyme disease could be a chronic and persistent infection after initial or delayed antibiotic treatment. I wrote the analysis using Carl Sagan's Baloney Detection Kit, because I thought it was a good framework for deconstruction of the article.

I thought this analysis would attract the attention of a number of skeptics, and from there, we'd engage in a lively discussion about how the article skirted the issue of whether or not chronic Lyme disease is possible and dive into the evidence for and against chronic Lyme disease being a persistent - if only subclinical - infection.

It never happened. 

Over a year later, and it still didn't happen.

And, to this day, only one person has ever left me a comment which directly challenged what I was writing about and judged the content of this blog - at least as far as the idea of persistent infection is involved.

That comment was this:

You error in giving any credit to the "chronic lyme disease" movement.

I recommend this paper in the current issue of The Lancet (Sep 2011;11:713-719) :

Antiscience and ethical concerns associated with advocacy of Lyme disease

Abstract: Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.

And pertinent to this blog, the authors conclude, in part:

"This situation is not likely to end anytime soon. As with other antiscience groups, many Lyme disease activists are well funded and often connected to influential political and media sources. Treatment of Lyme disease with long-term antibiotics is profitable for LLMDs and can be falsely reassuring to patients, who believe that they have a debilitating chronic infection and thus do not seek diagnosis and treatment for other disorders. There is no deficiency of either new patients or activists. The medical anthropologist Sharon Kaufman wrote that “Information technology has transformed the way trust and knowledge are produced”.67 Most people now find medical information on the internet, and the websites of LLMDs and activists are often viewed as legitimate and reliable sources of information, which they may not be."

         - LindaRosaRN


I responded to her, asked her a few questions, and she never responded in return. A drive by. 

She obviously wanted to be heard but did not want to engage. Her comment was on a post about the Huffington Post and Under Our Skin; it wasn't even related to the antiscience letter to which she referred.

And since then, it's been crickets all around when it comes to skeptics  - even though I get visits from Spirochetes Unwound (of Research Blogging), and other web sites which are science and skeptic-oriented on a number of levels.

It's almost as if someone gets to the front door of this site and decides it's not for them just because it mentions the words, "chronic Lyme disease".

I'm guessing the skeptical person who stumbles upon this page with that first glance thinks, "Oh, well, it's another one of those chronic Lyme activists. Why are they ignoring all the evidence that after antibiotic treatment, those with persisting symptoms develop an autoimmune disorder? I'm getting out of here. I'm not wasting my time on this..."

If they're thinking that, then perhaps an overhaul is in order for this blog because I'm not trying to ignore the evidence about autoimmunity or immune dysregulation related to persisting symptoms.

I'm trying to look at a number of different hypotheses - including chronic infection - because these topics are of interest to other patients and I think they all deserve discussion. And there are other hypotheses outside of chronic infection and autoimmunity which are being researched such as chronic Lyme disease as a metabolic disorder, and I give them exposure.

Because I enjoy science, I look at research and science news related to tickborne infections and their reservoir hosts in general, without any particular goal in mind other than to say, "Hey, look at this - isn't this weird/interesting/informative?" I want to inspire the curiosity of the world I have in others.

At first glance, this blog has been primarily written for other patients with persisting symptoms related to Lyme disease infection. But it has also been written to open the floor to anyone for discussion about different causes for persisting symptoms.

This includes skeptics. They are welcome to comment here and share their perspective, as long as they aren't rude and can state their position while providing supporting evidence.

After all - I have a history of being a skeptic myself, and at times don't just want the cheering section behind me saying they support me as a fellow patient. I also want someone to occasionally shake me out of my complacency if I've been stuck in it. I occasionally want someone to present me with a different point of view or new evidence if they have it so I can consider other lines of inquiry in trying to understand my condition.

I have to wonder sometimes if I need a colorful banner or animated message on the top left corner of the homepage which states, "I am a skeptic and a patient with persisting symptoms related to Lyme disease".

Or maybe I need a paragraph at the top of one of my sidebars in order to say more about who I am.

Something like this:

Side note to all scientists and skeptics, in case you missed it: 

This blog is written from the perspective of one person who has been in the unfortunate position of being a skeptic who is suffering from persisting symptoms after receiving an infected tick bite.  

I want answers to questions such as, "What on earth does someone in my position do?" and "What kind of pragmatic approach can I have to dealing with my illness when I am a skeptic and want evidence to support my position and the decisions I make?" and "What research is out there which supports one or another position as to the cause for my condition?"

This has to be done carefully, though, for the sake of my audience.

While I want skeptics to feel welcome here,  I don't want to scare other patients away who are dealing with the same struggles. And I want everyone to feel welcome here and not like they have to constantly defend their illness to others who may not only be skeptical - but who have the potential to engage in less than civil behavior online.

My concern here is not unwarranted. I have read skeptic sites for a number of years, and while I can read sites where issues concerning chronic Lyme disease are debated by infectious disease specialists, researchers, doctors, and patients - such as this BMJ series of Rapid Responses - I practically choke on some of the comments on this chronic Lyme disease post on Respectful Insolence blog, because some of the exchanges are insulting and do little to advance serious discussion about Lyme disease. (Some of them are thoughtful and intelligent, too, though, so I don't avoid reading the thread entirely just because there are insults.)

And I have to remind myself that any blog on the internet has the potential for ill-informed comments, regardless of the original content.

One response on the above linked blog betrays a certain basic ignorance about Lyme disease:

"Yikes, always knew Chronic Lyme disease was complete woo. It's called an anxiety disorder, get your meds. Even acute Lyme disease is looking to be a bit far fetched, now I am far from an expert but it seems a little bit out of a sci fi novel for a tick to harbor some strange virus, who proved this and what experimental data did they have? What were the experiments that prove that some tick borned virus is the cause of a human disease in the first place?"

What the... 

Acute Lyme disease looks far fetched and it must be sci fi that a tick harbors a strange virus?

Far from expert?

Indeed. 


And some comments are thoughtful and the response is respectfully delivered even if the content is something a number of patients would find disagreeable:

"...I don't doubt your story, but given how common tick bites are, it seems likely that an association could be found regardless of whether or not the tick bite actually caused the condition. Thus, anecdotes are not that useful in understanding the disease. Anecdotes don't tell us cause and effect. They show us why we should care, and they are important for that reason, but they do not tell us what is true. It takes a lot of carefully collected data to do that. 

How do you know the antibiotics are really responsible for your improved state of health? Remember, coincidences do happen -- during the summers I take Pulmicort, but is it really making my asthma better, or is the variable course of my asthma just being kind to me right now? I have anecdotes galore, but it's the clinical trial data that convinces me the Pulmicort really is working and it's not just my own desire for it to work making it seem as though it is.

Indeed, one day the truth may come out. But it'll have a hard time coming out when the science of Lyme disease is decided by politicians, and when those most invested in chronic Lyme disease would rather spend their effort treating patients than finding out whether or not they're actually doing the right thing for their patients. Too many of the positive studies I have seen have been enterprises in proving a point rather than testing an hypothesis; science can't be fair or unbiased or *truthful* if it does not entertain equally the possibility of being wrong."

They have a valid point. I can see that.

The problem is, when is this "one day where the truth may come out"?

I have to make decisions about what to do about my health TODAY.

That's the one truth which few of these exchanges seem to address:

How does one make an informed decision as to how to approach and treat one's condition when there is a medical controversy over how to treat it where one of the two options is not to treat it at all - and doing nothing leads to more suffering?

While the author takes the time to explain that anecdotes are not data (with which I agree) and that tick bites in and of themselves are common, there is plenty of medical research and documentation which provides evidence that a subset of infected Lyme disease patients go on to have persisting symptoms after initial treatment. For some of these patients, these symptoms are severe. For a number of them, symptoms persist not for months but for years.

The IDSA and other medical institutions and researchers acknowledge this condition. It's not well understood - but this phenomenon has been documented and is not the creation of a handful of woo charlatans looking to cash in on me.

And I am, for whatever unfortunate reason, the poor bastard who has this condition. And I:
- had a documented tick bite,
- developed an EM rash,
- received a positive blood test later on,
- developed all these symptoms which were clinically diagnosed as Lyme disease.

Unlike the claim made by Ms. Rosa above, no one has tried to con me into this diagnosis. I had a textbook case of Lyme disease. The evidence was there.

If anything, when I first contracted Lyme disease, I thought I was getting it taken care of early enough and would not have to touch the "Lyme controversy" with a twenty foot pole.

Unfortunately, life had other plans for me.

I ended up not being able to work, got sicker than I'd ever been in my life for months on end, then finally got better and off antibiotics and return to work... only to relapse, have to leave my job, and try to figure out what to do next.


Why me? I didn't ask for this. As someone who reads Free Inquiry on occasion, worked as a researcher, lived in a dorm full of physics and chemistry geeks, and thought Carl Sagan was one of the most brilliant and compassionate minds on Earth, I really did ask "Why me?".

But you know, the answer to a pathetic "Why me?" really is "Why not me?". No one asks for this. No one asks to be hit by a car, abused as a child, diagnosed with breast cancer, or to watch a parent die. We are all subject to things which happen beyond our control. It was just the random luck of the draw that someone who happened to be a skeptic would get a condition of which others are skeptical.

Ticks don't care if you like Sagan or vote for Romney. They just want lunch.

For better or worse, here I am. Now, how can I make the best of this? What can I make of this situation now that I'm smack in the middle of it?

I've thought that all I can do is write, research, and encourage others to do research. Learn and encourage others to learn more about tickborne illnesses. Encourage those who are out there who are working in microbiology and biology to engage in education and outreach which helps patients and sidesteps the politics. Educate one doctor at a time that someone with my condition exists, and that a tickborne infection can lead to chronic symptoms. Warn others and tell them to protect themselves when they go hiking and camping so they can avoid my fate.

Mainly what I want to do is get better and get back to living life as I was before - but this time, perhaps a little humbler, a little wiser, and with more compassion for others and more gratitude for myself.

In meantime, I keep hoping I'll meet others here who came from a similar background.

So far, in terms of scientists, I have had a few other Lyme disease patients with science degrees and research positions (or friends and partners of patients with science backgrounds) comment on this blog. Outside of these patients, researchers have commented less often and anonymously.

And I keep hoping someone who is a skeptic and also struggling with chronic Lyme disease or perhaps CFS/ME will come forward and we can review research together and try to make sense of it and figure out what the best course of action is. Even better? I keep hoping to see a microbiologist who researches Borrelia burgdorferi and has had persisting symptoms from Lyme disease take up blogging on their own and publish more insights of which are but a faint glimmer in my own head.

But so far? Crickets.

Surely we can do better than this. Surely one can light more candles against the darkness?

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0 Blog Log: Spirochetes Unwound on Flawed Study of Topical Antibiotics

Remember that article on topical azithromycin I posted earlier this month?

Our favorite spirochete blogger has some criticism about the research on which it was based here:

http://spirochetesunwound.blogspot.com/2011/09/flawed-study-claiming-prevention-of.html

A flawed study claiming prevention of Lyme spirochete infection with topical antibiotics

Two recent papers tested the effectiveness of topical antibiotics in preventing Borrelia burgdorferi infection in mice following a tick bite. Infection by the Lyme disease spirochete was successfully halted in the Knauer et al. study from Germany1 but not in the Wormser et al. study conducted in New York.2 However a flaw in the Knauer study may have unfairly tipped the outcome in the antbiotic's favor. (I'll save the Wormser study for another post.)

READ MORE HERE >>>

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0 Video: Baloney Detection Kit

I found this video narrated by Michael Shermer, a skeptic, which discusses a 10 question baloney detection kit which is similar in nature to Carl Sagan's Baloney Detection Kit.

I recommend it for its straight-forward approach and good questions to ask - and though it is made by the Dawkins foundation, its focus is not about religion but on questioning evidence.

Check it out...

[Video time: 14:40]

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1 Paper: Evaluating Research Quality

This is a brilliant, well-written publication, Evaluating Research Quality, on how to assess the quality of research you are reading - written by Todd Litman at the Victoria Transport Policy Institute - which is "an independent research organization dedicated to developing innovative and practical solutions to transportation problems".

Read Evaluating Research Quality Here: http://www.vtpi.org/resqual.pdf

Todd provides a number of examples of what makes good, well-informed research and what is biased, ill-informed research, drawing from examples in the transit sector but also general examples such as the source of statements such as "Eskimos (Inuit) have 23 words they use to describe snow" and ideas such as "AIDs doesn't kill people, antiviral medication kills people".

The entire document is well worth a look from start to finish, and the "Sixty Four Methodological Potholes" table is an interesting and extensive read. It's more detailed than Carl Sagan's Baloney Detection Kit and highlights some of the same illogical fallacies and bias some have presented in their publications and arguments.

This specific portion could be applied (and I should probably more stringently apply these pointers to papers reviewed here) to Lyme disease research and all research in general, so I want to share it. Credit goes to Todd Litman and the Victoria Transport Policy Institute, who allow republication with credit. (Thanks, guys.)

Research Document Evaluation Guidelines

The guidelines below are intended to help evaluate the quality of research reports and articles.

Desirable Practices

1. Attempts to fairly present all perspectives.
2. Provides context information suitable for the intended audience. This can be done with a
   literature review that summarizes current knowledge, or by referencing relevant
   documents or websites that offer a comprehensive and balanced overview.
3. Carefully defines research questions and their links to broader issues.
4. Provides data and analysis in a format that can be accessed and replicated by others.
   Quantitative data should be presented in tables and graphs, and available in database or
   spreadsheet form on request.
5. Discusses critical assumptions made in the analysis, such as why a particular data set or
   analysis method is used or rejected. Indicates how results change with different data and
   analysis.Identifies contrary findings.
6. Presents results in ways that highlight critical findings. Graphs and examples are
   particularly helpful for this.
7. Discusses the logical links between research results, conclusions and implications.
   Discusses alternative interpretations, including those with which the researcher disagrees.
8. Describes analysis limitations and cautions. Does not exaggerate implications.
9. Is respectful to people with other perspectives.
10. Provides adequate references.
11. Indicates funding sources, particularly any that may benefit from research results.

Undesirable Practices

1. Issues are defined in ideological terms. “Straw men” reflecting exaggerated or extreme perspectives are use to characterize a debate.
2. Research questions are designed to reach a particular conclusion.
3. Alternative perspectives or contrary findings are ignored or suppressed.
4. Data and analysis methods are biased.
5. Conclusions are based on faulty logic.
6. Limitations of analysis are ignored and the implications of results are exaggerated.
7. Key data and analysis details are unavailable for review by others.
8. Researchers are unqualified and unfamiliar with specialized issues.
9. People with differing perspectives are insulted and ridiculed
10. Citations are primarily from special interest groups or or popular media, rather than from peer reviewed professional and academic organizations.

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0 BBC Article On Assessing Risk (Cellphones, Carcinogens, & Others)

This isn't about Lyme disease and tickborne infections, but it is definitely food for thought when considering the risk involved in any action you decide to take.

Check this article out:

Link: http://www.bbc.co.uk/news/magazine-13886254

Summary Teaser:

BBC News - Go Figure: Do we understand 'risk' of mobile phone use?

What should we make of recent news reports speculating about whether mobile phones cause cancer? It's all about how we deal with uncertainty, says Michael Blastland in his regular Go Figure column.

I highly recommend reading the highly rated comments from the "All Comments" pile, too. Insightful stuff, there.

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14 Chart: Ways To Discuss Your Position In An Argument

Referring back to this entry: http://campother.blogspot.com/2011/05/repost-lyme-disease-rant-wall-of.html, here is a chart that shows different kinds of interactions one can have during a discussion with opposing positions.

From observation, discussions where parties hold conflicting views tend to degenerate and become either flaming troll wars or stalemates when anything from contradiction on down through namecalling is applied.

When Counterargument, Refutation, or Refuting the Central Point are used, the discussion is far less likely to degenerate into a flaming troll war and is more likely to be productive - people are more likely to walk away from the discussion not only having a better understanding of others' views, but also having a clearer understanding of what they themselves do not understand or where they lack knowledge...

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4 Video: What The Internet Is Hiding From You

I just watched this video with Eli Pariser, where he talks about what the internet doesn't let you see because it is tailored with you in mind.

This is almost ten minutes of video you don't want to miss, because it talks about how completely different results are shown for two people who are looking up the same keyword.

This means that one person who is interested in Lyme disease and conspiracy theories will get more results that include those two concepts - whereas a person who is interested in Lyme disease and scientific research will get more results that include those two concepts when they type the keywords, "Lyme disease" into their browsers.

It's important to be aware that what you don't see can be as important as - if not more important than - what you are actually seeing online. Anything that makes you uncomfortable, challenges your point of view, or is different may be hidden from you by design.

Watch this video. I think everyone should see it, the message is important whether you are looking up information on Lyme disease, US politics, health care plans, and anything you can think of entering into that little search box at the top of your browser...



How do you fix this?

Google needs to set it up so we have the option to turn filters on and off that involve personalization.

Until then, the wider a variety of different terms you use frequently in searches - including ones that you disagree with - the wider the number of results you are bound to get in return. They'll just get included in your filter by default if you use them often enough - even if you don't read all the results.

If you're liberal and searching for something on politics, put "GOP", "Republican", and "conservative values" into your searches every once in a while. Use "liberal Democrats" "social Democrats", "progressive values" into searches if you're conservative every once in a while. And for good measure, throw in "libertarians", "green politics", and "economy" in with any of those randomly and see what crops up.

You can do the same thing with just about anything to throw off Google's existing filter system, and use different search engines with different data sets just to see how their own internal algorithms work. Consider it your own science experiment in data manipulation - it's better you manipulate your own data than to let someone else do it.

Additional note: The spinning disk in the middle of the screen is a TED issue, if you see it - nothing to do with Camp Other. Keep watching despite it - it's worth the effort and you can see what you need to even with it there.

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0 Research And A Personal Story: Computer scientist researches own Lyme disease

Well, this has been posted elsewhere, but I just had to share it here, too:

Computer scientist researched her own condition, Lyme disease

Source link: http://www.post-gazette.com/pg/11101/1138165-114.stm

Read the above article, and see if you see yourself (or someone you care about) in this woman's shoes. (I know that I can relate to her own search for reliable medical information, that's for sure.)

After much research from many different medical sources, Ms. Mankoff decided to try long-term antibiotics. After 18 months of antibiotic use she could stop treatment and go on to write professional papers, work full time, and do research on how members of the Lyme patient community seek out information on Lyme disease diagnosis, treatment, and support.

There is mention in the Post-Gazette article above that the paper based on her research of the Lyme patient community will be presented at an upcoming conference on computer-human interaction, CHI 2011.

That paper is:

J. Mankoff, K. Kuksenok, J. A. Rode, S. Kiesler & K. Waldman, Competing online viewpoints and models of chronic illness. In Proceedings of CHI 2011. To Appear (Full Paper)

And here is a link to the FULL TEXT (no subscription required):

http://www.cs.cmu.edu/~assist/publications/11MankoffCHI.pdf

If anyone happens to be in the Vancouver area this May 6 and would like to attend the session, it will be from 4:00-5:20 pm. (A link to the conference appears at the bottom of this post.)

A description is as follows:

Session Chair: Julie Kientz (University of Washington)
Competing Online Viewpoints and Models of Chronic Illness - Paper

Session Chair: Julie Kientz (University of Washington)
Competing Online Viewpoints and Models of Chronic Illness - Paper
Jennifer Mankoff Carnegie Mellon University,
Kateryna Kuksenok University of Washington,
Sara Kiesler Carnegie Mellon,
Jennifer A. Rode Drexel University,
Kelly Waldman Duke

Abstract »

People with chronic health problems use online resources to understand and manage their condition, but many such resources can present competing and confusing viewpoints. We surveyed and interviewed with people experiencing prolonged symptoms after a Lyme disease diagnosis. We explore how competing viewpoints in online content affect participants’ understanding of their disease. Our results illustrate how chronically ill people search for information and support, and work to help others over time. Participant identity and beliefs about their illness evolved, and this led many to take on new roles, creating content and advising others who were sick. What we learned about online content creation suggests a need for designs that support this journey and engage with complex issues surrounding online health resources.


If you wish to attend CHI 2011 for only a day session on site, you must be warned that registration is steep:
http://chi2011.org/attending/registration.html

If you can't make it to Vancouver and pay for admission, consider sitting at home, reading the pdf of the paper above, and emailing Ms. Mankoff with comments and questions.

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12 Watching Train Wrecks

Every so once in a while, while surfing the net looking for other information related to tickborne infections, I come across blog entries about chronic Lyme disease that not only doubt its existence - but are followed by a firehose of troll-magnet comments from which I, in all my gory stupidity, cannot tear my eyes away.

Referring to the above linked blog post written two years ago, I just had to follow the train wreck to its decisive end: thread closing.

At least it wasn't deleted or moved elsewhere.

Seeing it was a reminder of one of the reasons I don't want ad hominem attacks on comments here. Once people go down that path, at that point they're usually talking past each other and writing parallel monologues anyway - trying to see which side can out-shout the other one.

Nobody is listening to each other at that point. It's not a dialog anymore.

I have to give one of the posters in the above thread credit for trying to explain their point of view - Janis, whoever you are, you posted some interesting research there - thank you.

And I give the primary antagonist on our doom-bound journey - Lance - the award for overlooking others' statements and arguing against something that Janis is not arguing about. Go... Lance... or something. Maybe... just go.

I saw both sides of their argument. I did. It was originally easier to read and see both sides, though, and as the ad hominem attacks and snap responses increased, the more I felt my blood pressure rise.

Lance was saying he thought that all the people who claimed they had chronic Lyme disease couldn't possibly have it, but eventually came across in a condescending manner about his point. Janis kept pointing out that you can't tell whether or not someone does, in fact, have chronic Lyme disease or not  - because they can be seronegative and the tests are unreliable. Lance countered back that he wasn't talking about people who have late stage Lyme disease - but all the people who didn't, had no evidence of infection, and yet claimed they had chronic Lyme disease - when it could have been something else. It continued on from there, with pretty much the same material repackaged in so many ways... Mostly increasingly antagonistic ways.

I can't tell you how many times I have read similar blog posts like the above and predictably know what the outcome is going to be before I even get to the first comment. And I know there will be a long list of completely polarized opinions there, and yet I read it anyway.

Alongside this compulsive behavior,  I suppose it's a healthy sign that I am always on the lookout for what I call the voice of reason - if there is any to be found. Comment #206 by the elusive Dutchman seems to be about the closest thing to the voice of reason.

Around it, there is a lot of chaos... Not to say that people aren't right about their opinion and experience within that chaos - it's just that it isn't very constructive because it ends up a shouting match.

About the one good thing about this is that it typically drives traffic to your web site - whoever the blog owner is probably got a lot of hits that day - just like the Chicago Tribune got a lot of hits for their "dubious diagnosis" article back in December.

Okay - maybe two: some readers of that thread have now been exposed to research that they otherwise would not have seen.

How can these exchanges continue otherwise? How do they get so polarized to begin with?

It doesn't help when one party responds to the other's points by number with 1) Lie, 2) Lie, 3) Lie, 4) Lie and distortion, etc. without clearly pointing out what it was they thought was a lie and what evidence they had to back their assertions. And on a bigger note, one of the problems underlying many of the comments is the fact that the term "chronic Lyme disease" as it has been used by the IDSA in recent years has been almost completely useless - and trying to use it in this thread only adds to the chaos.

After I read something like this, I usually shake my head and think, "What an utter waste of time that was." And I surf on to whatever it was I was originally looking for.

However, I can't shake the fact that every time one of these train wrecks lights up my screen that the same kinds of questions come up:

Why can't everyone take a closer look at all the research from all angles?

Why do they almost always end up with some ad hominem attacks?

Why can't more people have a meta discussion to break the contentious thread into something more constructive - such as why does the IDSA have such a useless and mutable definition for "chronic Lyme disease"?

Why not drive a very wide arc around this argument, bypassing it by asking about how patenting proteins in an organism could lead to issues in research?

How about imagining how much basic research would be conducted today if the Bayh-Dole Act hadn't been passed in 1980?

How about the unintended effects of such an Act on patenting, ethics, drug prices, and the increase in applied science projects?

Sure, these questions seem to become increasingly removed from the issue of persistence. But the point is pretty much laid out for all to see in the elusive Dutchman's comment itself:

"All Janis has kept saying is there needs to be a better test and more research. it seems to me that a lot of these patients are pushing for the same thing, more research, more reliable testing, and better treatment."

And that's just it. If people from both sides of this argument could agree on this much - then the rest of the arguments would eventually fade away.

Underlying the above comment, though, one has to look at what the pitfalls are and have been to getting better tests and research so far - and what can be done to change that situation. Because that is the underlying roadblock here, really, and nothing is going to change without it being addressed.

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1 Part 1: The Value Of Anecdotal Evidence

A few people have asked me in email about why anecdotal evidence is not something that the scientific community tends to accept, and one person even went so far as to say it was stupid to ignore the stories that Lyme disease patients share about their experiences and how certain patients respond to different treatments.

After all, anecdotes are based on real life experiences - and it is possible that a treatment does in fact work and someone's personal experience may be the first indication that there is something meaningful happening - either an improvement in symptoms or a step closer to a cure.

Is ancedotal evidence ever acceptable in scientific research and in professional healthcare? Why or why not?

I'd have to say that in general, it's acceptable on two counts:

1) Cases. When anecdotes are documented very carefully, they are called case reports or a case series. These case reports or case series are about individual patients and doctors' experience in treating them, and their treatment is not part of a controlled experiment. But careful documentation over time of patients' treatments, symptom changes, test results, and other findings at least ensures that information is recorded as events and changes unfold and also can demonstrate other variables which may have led to the patients' conditions (preexisting conditions, addition of new medications, insomnia, etc.).

2) As a means for a starting point for future research. If enough case reports or case series are completed that are pointing to a useful treatment or cure, then this can be used to develop and design controlled studies that can ensure that treatment is specifically helping improve certain symptoms or cure patients. Controlled studies help reduce or eliminate variables which may cloud or muddy the issue of what is or isn't changing patients' conditions, which is why they get more weight as a valid scientific approach than anecdote does.

Under both of these conditions, the information would have to be scrupulously maintained and recorded by someone who is reporting honestly about patients' conditions and their treatments.

Now that these two conditions are defined, what other conditions make anecdotal evidence less acceptable to a scientist who is trying to learn the truth about whether or not a treatment is effective in reducing symptoms or curing a condition?

In a way, we can think back to what I wrote about tomatoes in a comment a little while ago.

Two centuries ago, people in North America and parts of Europe did not make tomato sauce. Pizza as we know it was yet to be invented. The reason was because no one would eat tomatoes, as they were members of the nightshade family and it was believed they were poisonous.

Somewhere along the line, someone must have gotten up the nerve to be the first person to eat a tomato and discover after eating it that they weren't dead. From there, perhaps they went on to discover the joy of fresh salads with tomato, tomatoes roasted over an open fire, and other tomato-based dishes before others began slowly adopting the tomato as an edible item.

That first person could be thought of as brave, stupid, or both. In retrospect, though, most people just eat their spaghetti today without much thought about how people got around to eating it. If that person had been wrong, we would all be sitting around here with more fettucini alfredo than we knew what to do with.

But here's the thing:

What if the first person had gotten sick after eating that first tomato, and lived to tell about it? Maybe people would look at their experience and still regard the tomato as something less than fatal if consumed - but still something toxic and bad to eat. And then they would have been wrong, without knowing what the whole story was.

One of the first flaws in using anecdotal evidence is not being able to consider all the variables that affect one's condition and the outcome. In order for anecdotal evidence to have more value, other variables must be eliminated to make sure of the truth.

Looking at the problem of the tomato and the first person who got sick after eating it, one can come up with the following basic question:

How can you be so sure it was a toxin in the tomato that caused their symptoms?

They could have done any of the following:

• Eaten a bad piece of fish an hour before they ate the tomato, and the fish really made them sick.
• Contracted a stomach flu or virus from their next door neighbor, and that made them sick.
• Eaten an insect that was within the tomato that didn't agree with them.
• Had a small amount of mold or fungus on the tomato that didn't agree with them.
• Been unlucky enough to eat a tomato that was a bad tomato - not ripe enough, or somewhat overripe; perhaps bordering on rotten.
• Had an allergic reaction to the tomato itself.
• Had a medical condition that was completely unrelated to anything they ate or a passing viral infection.

So, one can think of a number of reasons why someone could have eaten a tomato and got ill afterwards - but each of these reasons has nothing to do with the tomato itself being a toxic food.

Without knowing any of these potential reasons, from external observation, one could be led to follow simple cause and effect, where the person observed to have eaten the tomato got sick shortly thereafter and everyone assumed during that time that toxins in the tomato was the reason why.

Well, you know what they say: Never assume, because then you make an...

Anyway, eventually someone else probably heard that others enjoyed eating tomatoes in other countries and lived quite long and fruitful lives despite this, and tried eating a tomato and didn't have any problems. Once enough people began eating tomatoes and not puking their guts out or dropping like flies, then more people felt willing to try eating them - even if they might later turned out to have had a serious allergy to them, at worst - or decided they just didn't like them, at best.

In the end,  most people on the planet have had the experience of eating a tomato by now and most of them don't get horribly ill from consuming them.

It might have taken a while to build up enough anecdotal evidence to convince people that tomatoes were safe to eat. After all, people were convinced for a long time that they were poisonous, and any of the above issues listed may have led to people getting ill around the eating of a tomato. It was probably clearer tomatoes were okay if the people eating them weren't also coming down with the stomach 'flu', washed their tomato before eating it, and they hadn't eaten anything else all day.

So, tomatoes are, by and large, safe to eat - and many would say they're quite tasty, too. (I do.)

Let's talk about ancedotal evidence using the tomato in another way, though - by making a claim.


What if a person were to say, "I feel so much better after eating this tomato," or even "Symptom x has improved ever since I ate a tomato."

Well, I admit that many times after I've eaten a tomato, I feel better, too - but usually it's because I've been starving and finally had something to eat. And it was tasty. And filling. Which brings me a certain amount of emotional and physical satisfaction.

But once I begin saying something as specific as, "Symptom x has improved ever since I ate a tomato", well, then that provokes a question in response to that claim:

How can you be so sure it was the tomato that caused symptom x to improve?

The person who ate the tomato could have done any of the following or had them happen to them:

• Had a temporary improvement in that symptom based on the usual ups and downs of their condition.
• Had a lasting improvement that occurred for reasons unknown to anyone.
• Experienced an improvement due to some medication they'd already been taking over time, and just noticed a distinct improvement after eating the tomato.
• Experienced an improvement due to some medication they'd started recently.
• Experienced an improvement due to some other supplement or food they'd been consuming over time, and just noticed a distinct improvement after eating the tomato.
• Experienced an improvement due to some other supplement or food they'd started consuming recently.
• Experienced improvement because of their frame of mind - belief in the tomato making them feel better actually led to them feeling better. (Also known as the placebo effect.)

And of course, it is possible that symptom x really did improve because they ate that tomato, but then: How would you know?

The only way you could know for certain would be to eliminate all the other variables as much as one possibly could, and test it. Find some way to measure the improvement in symptom x in that person, and eliminate the other variables - then go on to repeat that experiment with a larger group of people.

To be sure that it is the tomato that is leading to symptom improvement, the highest test of the tomato-causes-symptom-x-improvement-hypothesis is to give a fairly homogenous group of people with symptom x (where the above variables are eliminated) a tomato and measure improvement in symptom x post-consumption, and to give another fairly homogeous group of people with symptom x (where the above variables are eliminated) a non-tomato placebo that looks and tastes like a tomato and measure improvement in symptom x post-consumption of that placebo.

Next, don't tell which group has the real tomatoes and which group has the fake or placebo tomatoes. Better yet: Don't even tell the scientists running the experiment who has the real tomatoes and the fake ones, either. That way, when scientists come around to record data from the patients, they can't accidentally let slip in conversation or body language whether or not the patients in front of them are consuming the real tomatoes or the fake ones. They don't know anything about it. So they can't influence the outcome much.

This is what double blind studies are all about - and with them, it's supposed to be easier to obtain more reliable evidence that a particular treatment works (or not).

One of the problems with discussion of improvement of subjective symptoms - such as reporting "I feel better", or "symptom x is better", is that they do not make good outcome measures.

How do you measure them? Where do you draw a line in the sand between, say, pain that is a 6 out of 10 in one person compared to pain that is a 6 out of 10 in the next? What does '5' mean? (Ask Allie - she'll tell you what she thinks it means.) Does one person count having a runny nose as having a cold? If that person takes some Vitamin C, thinking it will help them avoid colds, they might dismiss their runny nose and report (and even remember) that they did not get any colds while taking the treatment.

One thing scientists have said all along is this: The plural of anecdote is anecdotes - not data. 

One has to come up with a well-defined set of criteria that can be consistently measured across a larger population in studies, and subjective reporting is often a problem given the examples above.

So, knowing all of this, what is the person who has already tried all of the tried-and-true, scientifically-studied treatments going to do?

What if one is a Lyme disease (and other tickborne infections) patient and has already blown through a number of antibiotics and is still symptomatic?

These questions and more will be addressed in part 2.

This work by Camp Other is licensed under a Creative Commons
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9 Three Conditions: Scientific Evidence for Chronic Lyme

During the past year, the question of how to make the case in support of the existence and treatment of Chronic Lyme Disease (CLD) came up in The FASEB Journal.

In one critical response, the writer said that in order to support the existence and treatment of CLD, the following conditions need to be met:

1. Develop a precise definition of what is meant by “chronic Lyme disease” so that it can be distinguished unequivocally from other medical conditions with similar symptoms.
   
   
2. Provide direct and unequivocal evidence that a patient suspected of having chronic Lyme disease really has a persistent B. burgdorferi infection that justifies antibiotic therapy.
   
   
3. Demonstrate, from the results of published, peer reviewed, randomized, placebo-controlled trials, that extended antibiotic therapy is beneficial and safe for the treatment of chronic Lyme disease.

Back on LN, one of the questions I posed was, "What is chronic Lyme disease?".  I posted it in all seriousness, wanting to know what people's responses were and why, in part because I was looking for consensus on the definition from the patient perspective. 

This is still an exercise I think worthy of working on - to make an effort to fulfill these three conditions in order to support or refute what is actually happening with CLD and put an end to the protracted arguments about it. 

I realize that the patient perspective and responses are only one piece that can define what is meant by CLD, and microbiologists and clinicians must confirm and define the condition - but patients' experience of their own illness and empirical evidence around it form a chunk of the data on which definitions by professionals rest.

But back to the above... How can anyone go about systematically providing the evidence required to meet these three conditions?

How many other diseases and conditions have been defined with precision, as is asked of CLD in #1? How many have not been defined with precision, but still meet the definition of a disease?

Is  #2 just about proving Koch's postulates? Yes or no? How can this be done with a xenodiagnosis study? Without a xenodiagnosis study? Remember, not all emerging diseases have had to fulfill all of Koch's postulates to be defined as they are.

Does #3 conditionally rest on the evidence of #2? This is something I always wondered and asked myself. 

Each of these three conditions to be met has its own challenges in providing evidence. How would you go about meeting these conditions, if money were no object and you had time to set it up yourself?

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0 Video: Critical Thinking and Skewed Views of Science

I found two good videos on YouTube which are pretty similar to the Camp Other view of analyzing information... They only take a few minutes of your time, but both were well-written, concise, and at points amusing.

Check it out.

Video on Critical Thinking [Time: 5 minutes, 13 seconds]

Video on Skewed Views of Science [Time: 10 minutes]

I think most people who watch these won't think it was 15 minutes and 13 seconds of their life that was wasted. 

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2 Commentary: Finding the right treatment that works

I'm realizing that it is taking longer than I thought it would to put together posts on persistence - if you read the chain of comments on this TED talk on quorum sensing, I had an interesting exchange with someone anonymous (anonx) which got me thinking of how to write about how Borrelia persists in the host (I recommend checking it out; it's worth it).

There's a lot of ground to cover, and it may take a while for me to firm up an outline or structure for the posts, which is what I'm working on bit by bit. In the meantime, other topics are a bit easier to write about because they are editorial in nature and not so dependent on citations.

I decided I should explain some of the thinking behind this cryptic post a couple days ago, because some people might have wondered what I was talking about and one person marked "???".

So, I'm going to take each of those two statements in that cryptic post and write more about them, starting with the first:


Just because someone is right about something, doesn't mean they are right about everything.

Some time ago I posted something I received in email about including the middle. This had nothing to do with what I'd posted about Pamela Weintraub's statement, to be clear on it, but it made some valid points.

In "Including the Middle",  I like to cite this excerpt:

"That there is no One True Way does not mean that all ways are equally valid, or that there are no false ways.  Similarly, there may be no one thing that works for everyone, but it does not follow that therefore, everything works for someone.  There are things that don’t work for anyone."

And I think this is true of treatments for Lyme and coinfections.

I've noticed there's a tendency for some people to think that if some part of a doctor's treatment or protocol has helped them regain their health or show progress that they assume that the rest of their treatments or protocols are likely to help to or have a well-reasoned basis behind them.

I can see where I'd want to hope that this is the case, but in my experience, this hasn't necessarily been the case. 

I'd have to say that two of the biggest frustrations I've experienced being a Lyme/coinfection patient have been:

1) Being treated dismissively by certain people - especially medical professionals who do not understand or validate the existence of my condition - and 

2) How hard it is to figure out what the best way is to treat my condition and what the truth is about it.

There is a ton of information out there to weigh and consider. It gets to the point of information overload for me, and I suspect that this is the case for many other patients trying to regain their health. Because of this, I think the fallback position is simply to trust one's LLMD to make treatment decisions.

It's not the worst approach I can think of in many cases. I might be biased because I think my LLMD is pretty good, and makes sound treatment decisions based on the research available out there. 

Even though I mostly trust his treatment approach, because I am who I am, I do ply him with questions now and then. Sometimes I have to stop my current treatment and try a different approach. Then we work together to find that next step.

But that isn't the full story for treatment across the board for everyone in every situation. In general, there is so much that remains a huge unknown about Lyme and coinfections that a lot of treatment plans practitioners come up with (both allopathic and alternative) are purely experimental. 

This is not to say they are all wrong. But it's to say that we have no clear way of knowing what really works for which group of patients, and the repeated mantra I have seen in the Lyme patient community has been that everyone is an individual when it comes to treatment.

As it stands, individual research is often the approach du jour, and there is no one guiding the process. Outside of consulting an LLMD, everyone comes up with their own method of deciding what they are willing to try and not try, do and not do. And this wouldn't be so bad if it weren't for the fact that people make decisions which are not informed, not well-researched, and can lead to Things That End Badly.

How does one go about changing this state of affairs?

Is it a worthwhile pursuit to try changing it?

I suspect that if one were to begin seriously tracking the data on certain groups of patients, that a pattern would be found as to which treatments are more effective for certain cases and that could be measured and quantified. We might also find which ones have been harmful for certain patient groups.

Right now, I don't see so much of this work going on and it would be to the patient community's great advantage if all the LLMDs began to collectively pool this data and share it (while protecting patient privacy, of course) with us. Then we'd know what is working and what is not - or at least get an idea of it. 

If a bigger number of patients try the protocols that are known to work better over time, then more successes can be documented within the community and also for institutions outside of it. This could only be an asset for everyone.

I'd also like to know what isn't working for patients on the whole - neither showing improvement nor cure - and dump it.  It is just as important to report side effects and treatment failures as it is to report benefits and success.

Of course, this is difficult to test when someone has a condition which waxes and wanes and has cycles, isn't it? 

I could be getting better because my Borrelia has gone into a dormant state, or I've just finished having a Herxheimer reaction and now that that's over I'm beginning to feel better. Or I changed antibiotics recently, and that helped my symptoms to improve. What is the true cause of my improvement? Do I care why, or do I only care that it happened?

Well, I do care that it happened. I want out of hell, that's to be expected. But caring why it happened is more useful in the long run because then I know I'm on the right track and doing something that works. I just need to prove it, and it would be good to see other people with my condition and medical profile reproduce my results. Then we know we might be on to something.

I'd like to see treatments based on something that is quantifiable and measurable across the board where we can see there are results, and not just have it be hearsay that a few patients got better by trying x or y protocol or herb on their own or under Dr. Foo's care or whatever one wants to fill in the blank there. Otherwise I could just be throwing money at something that is absolutely useless - or worse, taking something that isn't good for me. 

Even better would be to find someone who is totally independent and conflict-of-interest-free to be able to repeat and confirm treatment data using the same patients as well as new ones. Someone not involved with IDSA, ILADS, or any other group which potentially has a stake in the outcome. Because then from the outside, once the Lyme community's suspicions are confirmed and already existing data about tickborne infections are proven by someone independent of all the issues involved, then more credibility is achieved.

Given that those within the community are the most invested in the outcome of any study, the best source of credibility would come from any group which had proof of the problems that dog us who are neutral about the outcome. 

Perhaps after they did their research and got the results, they would be anything but neutral. One could hope...

I'd also like to see more energy put into the drive for requesting and requiring proof that something works, and questioning the use of something novel and newly marketed (whether by a supplement company, another patient, or a doctor of any stripe) for its effectiveness and safety.

It would be refreshing to see more people openly questioning in general, because otherwise how do I know what their individual process is in deciding how they made a treatment choice one way or the other without asking questions? Both for and against? Knowing about their process would help me and other patients to make informed decisions.

Right now, I'm still tripping over seeing someone claim on a given support group that Lyme Borrelia cysts last forever and can survive fires, and a sad number of patients worrying they will never get cured because of this statement. 

To them I have to say this: 

If you don't like what you are hearing, ask yourself these questions first: 

1) Is what I'm hearing true?

2) How can I find out if it's true? 

Then work on figuring out what a reliable source is for those answers. 

I make you any bet the source is not the person making the original statement or claim. Look elsewhere.

(In this case, you might want to begin with remembering what I wrote about Syphilis and Malaria, and look up the viability and temperatures at which Borrelia dies.)

Conversely, I think that if something sounds too good to be true, that if you like what you're hearing, if it raises your spirits and gives you more hope than you've ever had before... Then ask yourself those same two questions and figure out what a reliable source is for those answers.

Otherwise, you could be chasing down something that isn't worth your time, money, effort, and most of all: your health.

* Note: "He's" and "his" are being used as general pronouns here, as I get tired of writing "S/he's" and "his/her" all the time and think it is harder for people to follow the flow of writing with those in it. Apologies to the feminists reading along who prefer me to use "she" and "her" instead. I advocate English coming up with a gender neutral pronoun like other languages have.

This work by Camp Other is licensed under a Creative Commons
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0 Salon article: How to tame the media, not be tamed by it

I don't usually refer to Salon here that much and read them only on occasion, but I thought this article provided food for thought and thought you might also enjoy comments on it:

How to tame the media, not be tamed by it

It's about looking at what you read with a critical eye, and questioning everything you read.

One funny thing about the article is that by the end of it, the audience is questioning the very article which recommended they question what they read.

Brilliant.

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