Bullying Borrelia

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
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Henry
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Re: Bullying Borrelia

Post by Henry » Tue 15 Jan 2013 19:08

Campother: Alan Barbour is the foremost expert on tick borne relapsing fever. Although the evidence is clear that B.hermsii and B. turicate -- and perhaps a few other rather uncommon species of Borrelia-- have a relapsing pattern of infection, his extensive studies provide no evidence that this applies to B. burgdorferi. Note that this pertains to a relapsing pattern of INFECTION, not fever. Ben Luft's characterization is not correct.

Obviously, I was not equating relapsing Lyme disease to relapsing cancer. It is only use of the term "relapsing" that I take issue with. It creates the impression that an infection re-emerges spontaneously long after therapy, just as a cancer might re-appear (relapse occurs) long after chemo therapy. There is no evidence that is the case for Lyme disease in patients that have been treated adequately; however, reinfection certainly can occur.

Lorima
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Re: Bullying Borrelia

Post by Lorima » Wed 16 Jan 2013 16:48

Henry, it's funny that you keep using the phrase "no evidence", when so much of the time you are satisfied to argue by bare assertion. 
(see 
http://en.wikipedia.org/wiki/Ipse_dixit

I realize that memorization and recitation are the meat and potatoes of medical education, but we're trying to talk about science here. I suggest you read Richard Feynman's book Surely You're Joking, Mr. Feynman, in addition to Groopman's How Doctors Think, and spend some time meditating about the difference between repeating something you've been told, and understanding what's going on in physical reality. 

Especially relevant is Feynman's essay on what is (or was, at the time) wrong with physics education in Brazil. It was the same problem I'm seeing in medicine: the student were reciting verbatim from the textbook, but they couldn't make any connection between the words, and what one can observe by looking out the window. 

I think this is going to have to change in medicine, now that PubMed, PMC, and open access publishing are making it easy for intelligent lay people to assess the medical literature. It's not that all of it is bad; just that there seems to be frighteningly low standard of discernment between what the evidence offered actually shows, and what "expert opinion" claims it shows. All it takes is one very effective "key opinion leader" who gets it wrong, and the error can be propagated and amplified for decades, as has happened with Lyme disease. 

You might also profit from reading The Trouble with Medical Journals, by former BMJ editor RIchard Smith. It's important to see examples of people, like Dr. Smith, who are trying to clean up medicine, and who aren't getting crucified for it. Otherwise it's too easy to give up, and give in, to the idea that scientific sloppiness in medicine is inevitable, and that trying to correct it is social suicide. 

Finally, the work of John Ioannidis is relevant. I'm sure you're familiar with it; what do you think? 
(eg. 
http://www.theatlantic.com/magazine/arc ... ce/308269/ 
http://med.stanford.edu/profiles/viewCV ... _Ioannidis 
http://www.ncbi.nlm.nih.gov/pubmed?term=ioannidis%20jp 

It's very interesting to me that he is so popular. It must be something about the way he's saying it, but he seems to have tapped into a source of pent-up demand within the medical community, for recognition of the medical literature's shortcomings.

I'm eagerly awaiting my copy of Bad Pharma, Ben Goldacre's latest book. It was well received, when it was released in Britain, and it's due for American release at the end of this month. Goldacre is best known for mocking pseudoscience of the non-mainstream type, and that may give him more traction among the so-called "skeptics" than other critics of mainsteam medicine usually achieve. I think the Lyme field has a somewhat different problem than the one that is being so well documented about the pharmaceutical industry's bad influence. But the loopholes in medical thought and publishing that Big Pharma is exploiting so well, are mostly the same ones that let other bad science be published, and go uncorrected. 
"I have to understand the world, you see."
Richard Feynman

Henry
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Re: Bullying Borrelia

Post by Henry » Wed 16 Jan 2013 19:57

Lorima: You should establish a new medical school and teach us all how it should be done.

Since you mention Big Pharma, tell me why they would prefer the IDSA's recommendation of 28 days of GENERIC oral doxycycline -- a treatment for Lyme disease that costs about $40-- as opposed to ILADS unproven recommendation of extended i.v. antibiotic therapy -- for months to years or until the symptoms go away-- that costs >$50,000? Where is the conflict of interests ? And then there are the other unproven-- but very expensive-- remedies...............In my opinion, the Lyme disease activists have done a good job creating a paradise for quacks.

Henry
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Re: Bullying Borrelia

Post by Henry » Wed 16 Jan 2013 20:26

Lorima: Incidentally, I've spoken to many physicians with patients who come to them with various non-specific symptoms and are convinced that they have Lyme disease. Although all of the laboratory tests are negative, the physician might still put the patient on a short course of oral antibiotics (as recommended by the IDSA) just to be on the safe side; what the heck, that's not going to cause all that much harm. But, the symptoms remain after such treatment. In the absence of objective information that the patient really has Lyme disease, how would you justify putting the patient on an unproven course of extended i.v. antibiotic therapy? Why would you think that would be beneficial, if the patient is a resident of a State (e.g. Colorado) where there are few -- if any-- reported cases of Lyme disease? Would you consider other causes for the symptoms and then treat symptomatically? Give it a try -- tell me what YOU would do.

duncan
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Re: Bullying Borrelia

Post by duncan » Wed 16 Jan 2013 21:23

"Although of all the laboratory tests are negative..." Henry, come on, who really believes these tests (or at least the way the results are being interpreted) aren't seriously flawed? I've had IDSA members scoff at results - when those results were positive!

Lorima
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Re: Bullying Borrelia

Post by Lorima » Wed 16 Jan 2013 22:34

Good point, Duncan. Although, here in Boston, a lot of the primary care doctors believe the dogma about the tests, just like Henry. They're too busy to discuss the science, though.

Henry, if you're looking for a quick fix ("avoidance of uncertainty and complexity", anyone?), that's not going to happen. I think it's a big mistake to standardize the diagnosis and treatment of a disease, which is not well-enough understood to warrant strong recommendations. It may temporarily make life easier for busy (too busy?) physicians, but the problems it will drag in its wake are so large, and so essentially uncorrectable (due to liability issues), that it's not worth it. You may have given in to the idea that doctors should be merely delivery technicians, but I think they could be more, or at least some of them could. Why do we screen doctors for intelligence, if we're going to make them perform like assembly-line workers? 

I disagree that the activists are responsible for the proliferation of quacks in LD. It's the failure of mainstream medicine to correct the glaring errors in the current disease model and recommendations. This leads people to lose trust in mainstream medicine, and to patronize alternative practitioners. (Not me or mine, though.)

What would I do? Ideally, I would expose the errors of the current masters of the mainstream Lyme universe, and roll back the science to about 1983 or so. Then do it over, correctly this time, with the proper checks and balances, and no fudging for the sake of quelling Lyme anxiety, saving the tourist industry, getting a vaccine to market, or keeping disability and health insurance companies solvent. (I'm not suggesting you're doing these things personally. But I think they were done, semi-consciously, by people who don't understand that science simply doesn't work, if you let desired outcomes influence your collection and interpretation of evidence.)

Maybe this is old-fashioned of me, but I think that when science is distorted to meet goals other than finding out what's going on in the physical world, you end up with a big mess. On the other hand, if the science is kept honest and saved from megalomaniacs, as fortunately happened in HIV/AIDS for example, sometimes even the knottiest problems can be ameliorated. What if misinformation about the seriousness of HIV had been spread around, so people weren't motivated to protect themselves? What if no new drugs were developed, because people were pretending they already had a cure? That is what is happening in the Lyme field. 

I suppose you wonder why I am so sure the science has been distorted. The answer is, I have read Steere's papers, which are the foundation of the current dogma, and they're simply peppered with stated "conclusions" that aren't supported by the data in them. Here's an example, of one I analyzed earlier this month in this forum: 
http://www.lymeneteurope.org/forum/view ... 413#p33685 

It only takes a day for an experienced scientist to scan the Lyme literature and realize that it is teeming with stuff like this. 

My next question was, why has this gone on so long? As far as I can tell, it's because Steere staked his claim to the field early, and successfully defended it as a personal territory, using essentially political means. Edlow's Bull's-Eye touches on this, and Weintraub's Cure Unknown documents it in great detail. But it can be surmised simply from reading the scientific literature. All attempts to correct Steere's errors were successfully rebuffed; and almost everyone in the field either left, or acted as yes-men for his disease model, which is incorrect. (It may work for arthritis; I don't know any diagnosed patients who match his model, but I assume they exist, and that he selected them and based his model on them.) I suppose this can also happen in science (as contrasted with medicine) but there are certain features of medicine that make it especially susceptible to this kind of manipulation. I'm interested in clarifying these issues. 
"I have to understand the world, you see."
Richard Feynman

Lorima
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Re: Bullying Borrelia

Post by Lorima » Thu 17 Jan 2013 0:14

By the way, my remark about exposing the leaders and "rolling back the science to about 1983" was an exaggeration. It's not a good idea to exaggerate or indulge in sarcasm when talking about something this serious, so I'll take that back. 

Probably, gradually changing the dogma to reflect reality would be sufficient. Then science could get to work on the disease as it really is, and we might see some progress. I don't think all the old, flawed papers would have to be retracted, or anything like that. Medicine gets updated all the time without publicly humiliating anybody (I think - isn't that so?) If "mainstream medicine" magically woke up tomorrow and realized they'd been had, there might be some way of handling it that would save face for the leaders. It looks to me like physician survive all kinds of errors with their careers more or less intact, as long as they don't offend a power clique (which is more of a problem for the whistle-blowers than for those committing the fouls.) Look at Gallo, Nemeroff 
http://www.forbes.com/sites/paulthacker ... -of-miami/ , and Cavanaugh 
http://bmctoday.net/crstoday/2010/10/ar ... ns-learned# for example. If there's a way to get the science back on track without embarrassing the people who made the mistakes, that's okay with me. 
"I have to understand the world, you see."
Richard Feynman

Henry
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Re: Bullying Borrelia

Post by Henry » Thu 17 Jan 2013 0:22

Lorima: Steere's work focuses on arthritis because he is a rheumatologist by training and practically all of his grant support is from the NIAMD. Most -- if not all -- Lyme disease researchers know that the serology in patients with Lyme induced arthritis is strikingly different and not typical of that seen in patients with late Lyme disease or neuroborreliosis. This is most likely due to the rather strong inflammatory response in the arthritic joints of such patients. I think Steere has been quite careful in confining his views to that pathology.

Camp Other
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Re: Bullying Borrelia

Post by Camp Other » Thu 17 Jan 2013 0:25

Henry wrote:Lorima: Steere's work focuses on arthritis because he is a rheumatologist by training and practically all of his grant support is from the NIAMD. Most -- if not all -- Lyme disease researchers know that the serology in patients with Lyme induced arthritis is strikingly different and not typical of that seen in patients with late Lyme disease or neuroborreliosis. This is most likely due to the rather strong inflammatory response in the arthritic joints of such patients. I think Steere has been quite careful in confining his views to that pathology.
How does the serology in Lyme induced arthritis appear differently compared to a case of neuroborreliosis or late Lyme disease?

Lorima
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Re: Bullying Borrelia

Post by Lorima » Thu 17 Jan 2013 2:05

I'm looking forward with interest to the answer to Camp Other's question.
"I have to understand the world, you see."
Richard Feynman

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