Why is the CDC Trying to Block an Accurate Lyme Disease Test

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Fri 21 Nov 2014 16:39

And you have proof that late stage involves active infection? Yes, symptoms persist. But, are they proof of active infection?

velvetmagnetta
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by velvetmagnetta » Fri 21 Nov 2014 16:41

Why wouldn't they be?

Is there some other explanation? And I don't mean just a theory like some kind of auto-immune development - because there is even LESS proof of that!

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Fri 21 Nov 2014 16:47

You believe that such general symptoms are specific for Lyme disease? What is the proof that they are due to an active infection?
Last edited by Henry on Fri 21 Nov 2014 16:48, edited 1 time in total.

duncan
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Fri 21 Nov 2014 16:48

Henry, the history of Lyme speaks to active Lyme infection involving stages. Are you trying to re-write history? Your proof: Would that be culture positive proof? Antibody tests won't do? We ALL know it is virtually impossible to culture Bb in late stage. So as a researcher/clinician, what should you do? Answer that, Henry, please. Ignore your patients?? Is that the school you subscribe to? And what do you do when tests like the C6 Peptide and WB support what the patients reports?

In the absence of a workable culture for Late Stage, Henry, how do you decide? And you've sidestepped my questions regarding research at the federal level. Why aren't there any efforts to improve diagnostics for Late Stage? And how do you turn you back on thousands of Late Stagers by not seeking newer avenues of treatment? How do you justify these lapses in medical responsibility?

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Fri 21 Nov 2014 16:53

I expected better from you, Duncan. The inability to culture during late stage Lyme disease could just as easily be explained as the absence of an infection in the first place. That is the most direct and obvious conclusion. It is incumbent upon you and those who hold a contrary view to provide proof of an active infection -- other than just saying "what else could it be". Tell me, what is the justification for treatment with antibiotics in the absence of evidence of active infection? One can treat for symptoms, but not for infection under such circumstances.

duncan
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Fri 21 Nov 2014 17:02

Do not expect better from me, Henry. But I will tell you what: I have not forgotten my moral compass, nor have I turned my back on patients. I am doing my damnedest to advocate for them, and represent their concerns to researchers and clinicians who in their arrogance think they can dismiss and deride the sick because they have signs in their petri dishes that condone unconscionable behavior. Might as well disembowel a goat and spread out its entrails to diagnose the sick these days.

Science is a tool to serve people, Henry, not dogma or special interests. People should come first. SICK people.

Where is my proof Bb is still involved in Late stage? Henry, where is yours that it is not? Both of those questions are poor questions in that we both know neither can come up with substantive proof. In its absence, you need to defer to patients, Henry, because that's what's called humanity, and it has every bit as much relevance and validity as either of our "no proof" criticisms.

And why treat with antibiotics? I don't know. How about we research it? Forget about Klempner and that ragged research. Forget about Fallon and Krupp. Start anew with fresh eyes and innovative perspectives. Why is such a proposal anathema to so many in the IDSA camp??
Last edited by duncan on Fri 21 Nov 2014 19:40, edited 3 times in total.

Lorima
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Lorima » Fri 21 Nov 2014 17:15

Henry, I'm pleasantly surprised that you recognize that C6 is only widely useful during the EARLY stages. But then, I was surprised when you recognized that "everybody knows" arthritis patients have extraordinarily high antibody levels, compared to non-arthritic late stage patients. That really is progress.

I'm not sure what's blocking your proceeding from these facts, to a recognition that this renders the 2T test invalid for dependably diagnosing late stage, non-arthritic LD. It's a pretty simple, logical train of thought.

[Note: I just read the chain of comments that has appeared since I started composing this, and it seems that you do recognize this, Henry. Thank you, sincerely, for confirming this. My post is still relevant, so I'll go ahead and submit it.]

Once one recognizes that 2T is invalid diagnosing these patients, it becomes clear that the italicized sentence beginning on the first page of the IDSA guidelines is a policy statement inconsistent with the science, that is going to block diagnosis of most non-arthritic late stage patients (whether that consequence is its intention, or not):
Clinical findings are sufficient for the diagnosis of erythema migrans, but clinical findings aloneare not sufficient for diagnosis of extracutaneous manifestationsof Lyme disease or for diagnosis of HGA or babesiosis. Diagnostic testing performed in laboratories with excellent quality-control
procedures is required for confirmation of extracutaneous Lyme
disease, HGA, and babesiosis.
[italics in original]

This is why we patients can confidently say that the academic Lyme disease policy-makers (and their political arm, the ALDF) are not scientifically trustworthy, and should be ignored by patients and the (minority of) doctors who are capable of questioning authority. Their policy, which I generously assume is the result of some mistaken calculation of what will best serve the greatest good for the greatest numbers, is opposed to the need of most late-stage non-arthritic LD patients, for diagnosis and subsequent treatment. There are too many of them, to dismiss them as negligible collateral damage, even if one's value system allows that kind of calculation to enter into a scientific debate and compromise strict truthfulness as a scientific requirement.

Once one recognizes that the dominant LD research establishment is untrustworthy, all their assertions, no matter how often repeated in prestigious journals, go out the window, as far as I'm concerned. It becomes clear that whatever they're doing, it isn't directed toward helping current and future borrelia-infected people. The arguments AGAINST persistence are not convincing; the recommended regimens are unlikely to meet the MIC, let along the MBC, in poorly perfused tissues and the CNS, where Bb tends to live. And Bb has evolved to persist over long periods; it's not like some short-lived bacteria that have to reproduce or die off.

I personally find both the physical evidence, and the biological plausibility, of persistence after IDSA-recommended treatment, to be convincing. Or I should say, that to me, the preponderance of evidence points to persistence. It really doesn't mean anything to me that the current authorities have a strong opinion to the contrary; I've established to my satisfaction that they are not trustworthy (whether through incompetence or something else) scientifically. It's not just a few mistakes here and there, which every field makes; the whole paradigm is rotten, yet systematically defended against correction.

Even if the latest vaccine were truly highly effective and absolutely safe, and everyone could be convinced to use it (both of which are pretty unlikely), it would not solve the problems. Granted, since current treatment doesn't work very well, especially in the late stage, there isn't an easy solution. But surely, crafting a policy that is based on obviously untrue assumptions, was (and is) bound to create more problems than it "solves." The durable legacy may well turn out to be one more betrayal of public trust in medical scientists' truthfulness. Most people are sophisticated enough about how science is supposed to work, to realize that once medical scientists start demonstrably compromising the truth in public, no matter what the rationale, the power of the scientific approach has been forfeited. At that point the word Science becomes a mere Orwellian political tool.

Henry, at what point in the chain of logic, above, do your priorities diverge from mine, allowing you to vehemently defend the IDSA and ALDF views, while I defend the patients' needs?

[The latest comments may answer this; maybe, Henry, you are convinced that the MIC and MBC are actually being met, by IDSA treatment. Or that antibiotic stewardship policy issues outweigh patient and physician choice. Or that the 3-month treatment studies actually prove that fighting persistence with any regiment, would be futile, so there's no point in considering it.]

Perhaps it is as simple as your having no late-dagnosed LD patients in your household, and being understandably inclined to defend the consequences of your previous actions and loyalties. Meanwhile, I'm faced with the bad consequences, every day, in struggling family members.

I do believe, of course, that science is the way to address these problems. (I just think that mainstream LD science diverged from fidelity to physical reality, sometime in the mid-1980s.) Could it just be that you aren't accustomed to making the distinctions between accurate science, well-meaning but fatally flawed or over-generalized science, and the capital-S rhetorical Science that can be used to justify a policy that seems expedient in some way? Is it that you and your colleagues are inclined to be authoritarian, while I'm inclined toward iconoclasm? None, or all, of the above? That's the part I'm currently investigating. It's still somewhat unclear to me, and if you would, you can help me understand where our thinking diverges.
Last edited by Lorima on Fri 21 Nov 2014 18:05, edited 2 times in total.
"I have to understand the world, you see."
Richard Feynman

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Fri 21 Nov 2014 17:38

Duncan: Let me see if I understand this correctly. You are asking me to prove that there is NO ACTIVE INFECTION during late stage Lyme disease? It doesn't work that way. Proving a negative doesn't make sense. If you believe that there is an active infection under such circumstances, it is incumbent upon you -- and others-- to demonstrate/prove it. That's the way science works.

duncan
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by duncan » Fri 21 Nov 2014 17:53

No Henry, that's the way Science is supposed to work. Science is MIA relative to Late Stage Lyme. The gatekeepers of Science have bolted the doors and covered their ears.

Science would probably support the claims of the thousands upon thousands of late stage patients if the scientists would engage in meaningful research. And this observation doesn't even include the boatloads of research - much of it done unilaterally and without NIH backing - that support active infection in both Late Stage and post treatment patients. Active infection has been demonstrated in more than one fashion, time and time again. But the most telling demonstration is that almost HALF of those with confirmed infections continue to be sick after treatment. And mainstream conventional researchers seem content to rest on semantics while the careers and lives of the sick litter the streets.

This is NOT Science, Henry. It's scientist behaving badly.

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Fri 21 Nov 2014 18:43

If all this were as clear to others as it is to you, there would be no controversy and everyone with late stage Lyme disease -- whatever that may be according to your definition -- would have been cured by now. No doubt much of the work you are referring to has been discredited or disproved. You live in a fantasy world. And, don't get sick on me again.....

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