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New Dean Baker: Chronic Lyme Disease and the TTP.
Dean Baker:

Wednesday, 10 December 2014 20:37

I apologize for a bit of a digression here for personal reasons (my wife has chronic Lyme disease), but if you'll bear with me, I think I can make some connections. The immediate prompt for this post is a snide article in Slate by Brian Palmer, warning readers that, "New York is about to change its medical misconduct law to protect quacks."

The "quacks" referred to in the article's sub-headline are doctors who provide long-term antibiotic treatment for people who have chronic Lyme disease. As the article tells us, chronic Lyme does not exist:

"The Infectious Diseases Society of America—the association of scientists and clinicians who study this sort of thing—has repeatedly characterized chronic Lyme disease as 'not based on scientific fact.'"

[...]


Lots of things are tied together in the US medical system, and they're going to get even more complicated if things like the TTP become law.

Oh, and fracking is a piece of the puzzle, too...

Cheers,
Scott.
New same fuggwits who denied that ulcers were bacterial in nature
Any opinions expressed by me are mine alone, posted from my home computer, on my own time as a free American and do not reflect the opinions of any person or company that I have had professional relations with in the past 59 years. meep
New Some of them are
Some aren't. The wife of someone at my office has a non-heliobacter pyloris ulcer.
Regards,
-scott
Welcome to Rivendell, Mr. Anderson.
New This is not a simple problem
The medical consensus has been wrong about many things, great and small, as long as there has been any such thing as a "medical consensus". Bad humours, vital essence, leeches (the first time around), spontaneous generation of maggots, bacteria's very existence, etc.

The average person doesn't dedicate their life to studying this stuff, so we have to put some level of trust in the people who do. When those people are frauds, there should be some repercussions. Quacks should be punished.

The problem is a lot of things that start out as quackery are later proven to be true. If no one can question the current consensus we stop advancing. So where to draw the line?

When we're trying to legislate, there should be a clear difference between "not proved" and "proved to be false". When the Infectious Diseases Society of America says that chronic Lyme disease is 'not based on scientific fact' that has a very specific meaning: There are no studies that conclusively demonstrate the condition.

No, legislators will not get this right.
--

Drew
New 1st-degree hearsay corroborates his wife's travails
(as mentioned en passant here, re other US-Medicos' attitudes), their seeming-incapability of listening with anything-like full attention: even to those clearly intelligent, even when they demonstrate that quality in the substance of their own 'logs' and detailed observations. Some are doing better now, of course; still ... plenty of the former. To my mind, long has been been demonstrated the arrogance and supercilious mien, via such weasel-words as, non-specific-vaginitis which translates to ~ "Gee we don't really 'know' what's causing this, but we can give you a Rx which works on similar 'diseases'". (Some decent minds also question the entire 'disease' hypothesis!)

(Worse -in spades- is the similar training of Vets, these shielded especially well via the lobbying-into-law of special exemptions, greatly limiting chances for any legal options.) Clearly in US For-profit medicine, the bizness implications set the standards/no surprise there, when it comes to 'monetating' any irreversible errors, of which there are many. Capitalism offers many peculiar conversion-factors: when it's your money or your life: when you need a court.

The experience of the person with Lyme symptoms?/'disease'?/"syndrome"==the dismissal-word oft employed: echoes the comments of Baker. She was fading-away before a lucky intro to an M.D. on E. Coast who finally treated her. Efficaciously, almost to normal health. It's far too late to contemplate the re-training of tens of thousands; maybe Next-gen? (Dunno if 'Lyme' can be a litmus for other problems; there are so many of those.)

Baker surely has the chops to ferret out working alternatives as R. did, and can afford that delving (R. had no such income, but had a good working mind.) 'Crap shoot' applies to so much in The Fatherland, even when it was less Secure from things that go boom in the night.


[rhetorical: add to list?]
How could we determine if "many" of our Prof. Org.s perform their functions ~~ as well as frat-houses exemplify (certain laudable qualities we attribute to) early Greek scholarship.
Ever since working with M.D.s my mantra-to-Immune System has been a simple one:: Don't! get Seriously ill here. Period. [Stock tip: invest in Hospices, a growth Industry in the dis-US.]
New More.
Here.

Cheers,
Scott.
New Wow.. CLD has become a tar-baby; everything from the psychosomatic tag to
calumniations of "rich bitches" (fill in the ad-hominems of 'patients' who show up with Something! that isn't in the PDR), has veritably become chronic for them: yet the claim has produced already, opposing-camps! As if the inconclusive diagnoses themselves: did not demonstrate a state-of-ignorance, but only: unstable wannabe 'patients'.

Could this issue be a further demonstration of the subtler side-effects of say, the language-murder that produces scientism?--and the increased active disdain for 'science' itself--many medicos do really sloppy-Science IME, anyway. Add-in the oft supercilious treatment of (quite competent patients) via those MDs who missed: If you want Doctors to stop acting like Gods? get up off your knees.

I've no competence to evaluate the mental-state of the person and her med-history; that info doesn't constitute more than one data-point, at best. But I recognize the creeping-Certainty form as manifests in the vehemence of some of those who Have 'chosen sides' already: on an issue obviously not studied sufficiently yet! (outside this set of threads, I mean.)

I get (enough..) the 'blinding' facet, and it's worthy of consideration, in its absence. But there seems a larger-scale issue here, when those trained to be objective choose-sides quite more frimly than the unstudied-matter can possibly justify.
cf.
written by watermelonpunch, December 19, 2014 1:38
Another thing that bothers me about this topic...
Not here, but how I've noticed it's handled in some of the articles I've seen recently.

[...]

This creates a really bad framing premise.
So you know, anyone who dares speak out about having had a bad case with Lyme Disease can immediately be characterized to be the sort of person believing vaccines cause autism, that mental illness doesn't exist, that HIV doesn't cause AIDS... and you know, are probably likely to be found watching Youtubes of Infowars, Brother Nathanael, or videos about the Illuminati or how the Apollo moon missions were faked.

I have a hard time believing that's the case for even a small percentage of the people who have Post-treatment Lyme Disease Syndrome symptoms.

The dozens of people I've ever known with Lyme Disease tested positive for it.
I don't think any of these people were anti-science. Certainly none were against utilizing modern mainstream medicine.

And though it's rare I grill people to find out what they think of various weird conspiracy theories... I've usually found that people who believe in that kind of stuff tend to tell me without me asking!!
And of all the people I've had lecture me on various things considered to be "out there" (including the guy who told me that Corning Glass had its own agency of international super spies)... none of those people ever told me about having Lyme Disease, chronic or otherwise.

Then this (!)
written by liberal, December 19, 2014 4:57
tew wrote,
Maybe, but we'd need to take a scientific approach to determining whether that statement is true. How would you measure how much respect a scientist shows for science?

There's a lot of work already done on this in the particular case of the abuse of statistics in the biomedical sciences. See e.g. the work of John P. A. Ioannidis. There's also quantitative work done on publication bias using e.g. funnel plots.

The basic story is that the bullshit factor in medicine and medical science is enormous. Not just in pharma, where as Dean points out the opportunity to collect economic rents creates enormous distortions, but everywhere. Just as an example, the science behind the amine theory of depression is actually extraordinarily weak, and SSRIs do a little better than placebo in treating depression, but by an amount that isn't really clinically significant.

[...]

More..
{{sigh}} Bolded: that's been my view for decades. Mare's nest. Nice try for some equanimity, but the word [Id] got appropriately touched-on in one post. :-0

My bias would be towards those who malign the basic-competence of most MDs du jour, as it fits my professional experience of their behavior, re heavy-ion dosage to Their Patients. (I vas dere, but that isn't a lot of 'data' either! nor any post-dosage info.)

Some days it looks as if that alleged Western Civilization has actually cracked-throughout, but a strong-enough wind has yet to arise, to produce visible rubble.
Were I to acquire some Elite new disease, I have little idea where? I'd go first, then second/third for a diagnosis, let alone vetting the proposed "procedure"--always given as-if it were verified by NIST.

One thing I'd bet a C-note on: the garbling will get worse before it might ever reduce; $$-corruption, of unknowable degree has entered science and Science too, as surely as there is also scientism. That drive for One's Nobel.. that Id-fantasy includes {tacitly} a House on a Hill somewhere too, as earned-perk.

I hope there's enough Luck to go around :-)
New Yup.
I've got sympathy for both sides. I'm sure there's too much "woo" in the CLD camp, but I'm also sure that too many on the "no such thing as CLD" camp brush it off as "everyone over 30 has aches and pains and malaise" or "it's psychosomatic, especially in women". It sure seems like there's too much certainty in the "no such thing as CLD"/"it's unscientific to treat CLD with antibiotics" camp. Very few people actually want to go through the hassle of visiting doctors, complaining, etc., just to get attention. Especially US doctors... :-/

When professional prestige is on the line, opinions too often harden. And they too often have strong opinions outside their area of expertise. I still recall one of Joe's doctors arguing with me when Joe was having one of his medical crises. (Roughly) "Just look at him - at 85 he's lucky to be alive!" We ended up arguing over actuarial tables - life expectancy at 85 is about 6 years, while he kept talking as if he would naturally keel over any minute because life expectancy at birth was around 53 when he was born... :-/

Here's hoping a clearer answer to the question of how to treat people with CLD symptoms appears sooner rather than later. There are too many people suffering at least in part because it's not taken seriously.

Cheers,
Scott.
New thats why we the patients are responsible to learn about the disease
An average Doc bases his treatment/diagnosis on their education and vast experience as well as their hunches. If they have seen it before, looked at it deeply their options are good. If it is new to them, they don't have time to deep dive something new, they study briefly the consensus then treat from there.

If one is capable of deep diving a subject then do so and educate the doc with a brief sample of your conclusions with links for them to follow up. Most Doc's appreciate patient awareness as long as there is no woo involved.

Any opinions expressed by me are mine alone, posted from my home computer, on my own time as a free American and do not reflect the opinions of any person or company that I have had professional relations with in the past 59 years. meep
     Dean Baker: Chronic Lyme Disease and the TTP. - (Another Scott) - (8)
         same fuggwits who denied that ulcers were bacterial in nature -NT - (boxley) - (1)
             Some of them are - (malraux)
         This is not a simple problem - (drook)
         1st-degree hearsay corroborates his wife's travails - (Ashton)
         More. - (Another Scott) - (3)
             Wow.. CLD has become a tar-baby; everything from the psychosomatic tag to - (Ashton) - (2)
                 Yup. - (Another Scott) - (1)
                     thats why we the patients are responsible to learn about the disease - (boxley)

Good thing it smells like Kung Pao Tofu instead of like Greg's ears.
86 ms