A Modest Proposal

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: A Modest Proposal

Post by Henry » Mon 28 Dec 2015 15:17

" Suggestions like trying to shoehorn people infected with TBDs into an MUS psych-mold arguably only worsen the perception of aging Lyme-dogma supporters".

Your statement illustrates the nature of the problem and what you refuse to acknowledge. First, what is the evidence that most -- if not all-- of these people really have a TBD ? You yourself speak about "seronegative Lyme disease" as a distinct. Then what other evidence is there to support a diagnosis of Lyme disease as one of the many TBDs these people might have? I'm still waiting for the answer to that question. A what is the evidence -- in such people-- of other TBDs? None.

Second, had you bothered to read the IOM report on MUS that I cited, you would have found that it is a serious attempt to address a very real problem -- chronic undefined pain-- that may affect about 100 million people in the U.S. An appeal for a multidisciplinary effort to examine the problem -- looking at if from different directions and angles-- seem to be a reasonable approach and the NIH has already begun such a initiative. I don't recall a psych approach being mentioned as a favored alternative by any means.

Third, one ought to show at least some discrimination with respect to the value attached to the unfounded opinions of LLMDs and members of ILADS. If you examine their credentials, they have nodocumented experience in doing basic or clinical research on Lyme disease -- or anything else for that matter. In contrast to those who prepared the IDSA guidelines, why should I believe anything these "pseudo-experts" have to say? They have nocredible evidence to indicate that any of the therapeutic approaches that they "tout" are the least bit beneficial or safe -- none. If you feel comfortable getting your information on TDBs from people like that, it's your business. However, I prefer to put my trust and confidence in the real and accomplished experts.

Fourth, look at the latest version of the ILADS guidelines. Allof their recommendations -- by their own admission -- are based on "very low-quality evidence". There are no references to support any of the recommendations made. Does that inspire your confidence?

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Mon 28 Dec 2015 16:24

First: there you go again with the "if not all". I am 2T positive and C6 positive. Is that not objective evidence? There are many like me. I also have cognitive testing supporting decline (as per the IDSA). Also abnormal MRIs. I won't even bother with studies that counter the accuracy of the 2T or demonstrate conventional therapy leaves so many sick (even though the IDSA admits to up to 20% remain sick - let's see 20% of 300,000, year after year - Could you please total that figure for me for, say, the last 20 years?)

Second: I care little about the IOM pain/MUS report as it does not pertain to people with TBDs. I care about how MUS is used by the BPS school for other diseases and disorders. You should be, too. MUS is seen by a large swath of the medical community as a psych label. If you are not aware of it, you need to be. If you are....

Third, I care about the patients, Henry. Not ILADS. Not IDSA.

Finally, have you come up with answers to my earlier questions yet? I think it cheeky that you asks questions of me when you have left so very many unanswered yourself.

Henry
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Joined: Thu 10 Nov 2011 18:49

Re: A Modest Proposal

Post by Henry » Mon 28 Dec 2015 18:10

I've heard all this before. I have answered your questions. You just don't like -- or refuse to accept-- my answers. That's your problem, not mine.

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Mon 28 Dec 2015 18:34

Henry: "That's your problem, not mine."

That is the type of answer far too many Lyme patients hear from too many doctors who conform to outdated diagnostic and treatment protocols.

It's a shame.

dlf
Posts: 294
Joined: Sun 7 Apr 2013 15:36

Re: A Modest Proposal

Post by dlf » Mon 28 Dec 2015 23:07

Henry, you wrote:
Once again, you fail to grasp the main point, i.e., there is no evidence -- based on the results of independent carefully controlled studies-- to support the views of Horowitz and his disciples . None whatsoever. What he is doing is treating gullible people with his unproven remedies based on unsubstantiated "hunches " or "gut feelings" in the hope that a few will come forward to claim they've experienced some improvement (placebo effect?). He is "using people like guinea pigs".

Henry, what you fail to grasp is the simple fact that when the IDSA sanctioned diagnostic methods and treatments are inadequate they leave Lyme patients to devolve with ever worsening late stage symptoms. When the treatments provided are not efficacious, the IDSA (and you) then try to deny that patients such as us even exist. There is no acknowledgement that there might be a real problem with trying to adopt a "one size fits all solution" when both the patients and the pathogens are highly heterogeneous.

While some of the studies done by the researchers you admire have been useful and have provided a spring board for scientific advancement, others have only served to promote unsubstantiated conclusions. Unfortunately, so much of the evidential science that the IDSA rests it case on has been founded on studies motivated by a pile of assumptions that in some cases were simply misguided and in other cases were just plain wrong, like the one you pointed to when praising Dr. Steere's efforts.

You have a habit of selectively touting what you would like to believe. When the research itself downplays or dismisses the severity of the suffering demonstrated in patients who have unresolved symptoms, you believe it . Other studies have shown that Lyme patients can and do have severe sequelae and symptoms that drastically alter a person's quality of life, but you seem to think these are unimportant or somehow wrong. Henry, some of these studies you laud as accomplishments have even demonstrated that patients like us do exist, but for some reason those are studies you have chosen to ignore.

That other doctors have bought into this paradigm hook, line and sinker (mainly because they don't actually read the full text versions of these studies) is a tribute to the effectiveness of the IDSA power base and media reach. The Association of Medical Microbiology and Infectious Disease Canada (AMMI) is a case in point. AMMI endorsed the IDSA Lyme Guidelines in October 2011. At the time, they had 551 members of which 440 were in the Active Member category. These Guidelines were endorsed by the AMMI Council and the Communications and Public Relations Committee which together totaled 22 members. It appears that this was by no means an open process. The review that was undertaken was not transparent and there does not appear to have been an opportunity for consideration, debate or consensus even among all AMMI members. Whether AMMI members generally have knowledge of Lyme disease or an understanding of the controversy is unknown, but highly unlikely. In 2013 AMMI had 611 total members, of which 436 were active. In contrast, in 2013, there were 77,674 physicians in Canada. They certainly were not asked whether they agreed with the AMMI endorsement.

Perhaps those physicians who endorse the guidelines are the gullible ones, believing that the publications, predetermined study conclusions and the resulting recommendations are in fact based on evidential science, when only some portion of the referenced studies were actually well designed and the only some results and conclusions were honestly reported and truly support some portion of the guideline recommendations.

So, what do the IDSA guidelines offer in terms of recommendations when the sole basic "one size fits all" treatment fails to cure the patient or alleviate the symptoms?

From the patient perspective, under those circumstances IDSA provides absolutely no real answers and no solutions.

Why the heck do you think patients look elsewhere for help?

As to where these patients might turn, well that is up to the individual. Many have realized that maybe they need to have a proper medical evaluation and a plan to move forward that is more geared to personalized medicine. In an ideal world every possible path would be studied, but we don't live in an ideal world.

Maybe, just maybe, there is no "one size fits all" treatment panacea. Some Lyme patients live in a world of pain and suffering and can't or won't lie around waiting for a single new and better protocol to be developed. Maybe we realize that such a well studied universal treatment is an impossible dream.

Research generally focuses on populations, but individual persons can vary substantially from population norms and certain population segments have been historically under-researched (racial minorities and people with co-morbid diseases and conditions). Unfortunately, with Lyme disease, the quality and quantity of empirical medical evidence is sadly lacking. This suggests that the knowledge gained from clinical research does not directly answer the primary clinical question for a physician of what is best for that particular patient facing them.

This problem is not unique to Lyme disease alone. How many physicians use patient's as "guinea pigs", prescribing one medication after another to find one that might work in a given individual and not cause horrific side effects? Pain medications and cholesterol-lowering drugs are just the tip of this iceberg.

Henry, I do believe in the principles of Evidence Based Medicine (EBM). In 1996, David Sackett and colleagues clarified the definition of evidence-based medicine as "the conscientious, explicit and judicious use of current best evidence in making decisions about the care of individual patients. ... [It] means integrating individual clinical expertise with the best available external clinical evidence from systematic research."

Evidence-based medicine applies population-based data to the care of an individual patient, while respecting the fact that practitioners have clinical expertise reflected in effective and efficient diagnosis and thoughtful identification and compassionate use of individual patients' predicaments, rights, and preferences.

Like duncan, I care about the patients, not about ILADS, or IDSA, or the historical legacy that has brought us to the current situation.

Henry, for good or for bad, by it's actions and inaction, IDSA gave birth to ILADS. Parents and their grown offspring need to and should put aside their egos and engage in meaningful dialogue. Maybe that way, you would finally have your answer as to how ILADS physicians diagnose and treat Lyme patients.

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: A Modest Proposal

Post by Henry » Tue 29 Dec 2015 17:37

dlf: I will make one last statement before I close my discussion on this topic. From the outset, my comments/remarks were confined to Lyme disease in the U.S. as it always has been defined historically, i.e., a bacterial infection caused by the spirochete, Borrelia burgdorferi. . The statements that I have made are supported by a large body of peer-reviewed scientific literature on the diagnostic, clinical, and epidemiological characteristics of that infection and it treatment. As I also have noted, such concepts are universally accepted by national and international experts on Lyme disease -- the clinical entity in question.

Unfortunately, you and others have a different view of Lyme disease -- one that remains to be defined unequivocally so that it can be diagnosed correctly and distinguished -- with certainty-- from other medical conditions with similar symptoms. In view of the myriad of subjective symptoms that have been attributed to this version of Lyme disease, I doubt whether this can be accomplished by patients alone. There is no doubt that those you characterize as having your version of Lyme disease are really suffering from something that merits appropriate medical treatment and care. Unfortunately, neither I nor you know what they really have and how it should be treated. It may very well be that it can not be cured by antibiotics. Although I wish you well in your efforts in that regard, talk and speculation are cheap; success is not likely to come without hard work and the results of solid evidence-based rigorously peer-reviewed research which I find to be woefully lacking in your world. But, we will see what the future brings...........My "modest proposal" was really a way of offering to "wipe the slate clean" so that you and your colleagues can start from the beginning so that you would be free to develop your own traditions and history by giving your version of Lyme disease a new name -- not to be burdened by the many shortcomings you attribute to others. It would be a splendid opportunity to show us how to do it -- starting from scratch.

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Tue 29 Dec 2015 18:16

Your proposal was a gem, Henry. :lol:

Abandon our TBD diagnoses in favor of a psych label.

If this is what the new Guidelines tend towards, I fear for our future. :cry:

Henry
Posts: 1108
Joined: Thu 10 Nov 2011 18:49

Re: A Modest Proposal

Post by Henry » Tue 29 Dec 2015 18:49

Duncan: Your paranoia is showing.

You have NO diagnostic methods for TBDs -- none. That's the problem. If you don't like the ones approved by the CDC -- not the IDSA-- for 2t testing . So, why don't you and your friends develop your own?

Who said anything about a psych label? I never specified any cause for the non-specific symptoms you and others attribute to Lyme disease as it has been defined historically.

I don't know anything about the new Guidelines which have yet to be made public.

Lorima
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Joined: Mon 29 Oct 2007 20:47

Re: A Modest Proposal

Post by Lorima » Wed 30 Dec 2015 12:28

And the CDC/IDSA method is a fake. It misses a large proportion of the Bb-infected, yet knocks LD out of their differential diagnosis. But a fake method is better than honest uncertainty, or a clinical diagnosis, eh, Henry?

Actually, the CDC has said numerous times, explicitly, that 2T should be used only for surveillance, not for diagnosis. Though individual agents like B. Johnson seem to have missed that. This is where CDC history diverges from that of IDSA.
"I have to understand the world, you see."
Richard Feynman

duncan
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Joined: Wed 5 Sep 2012 18:48

Re: A Modest Proposal

Post by duncan » Wed 30 Dec 2015 14:53

What I find particularly disconcerting is Henry's suggestion that Lyme patients specifically embrace MUS as a label. Anyone willing to spend more than 20 minutes researching will likely find that entire schools of psychs may be quite comfortable co-opting that territory.

I find it odd that Henry seems unaware of this.

Remember when chronic Lyme used to mean Lyme refractory to treatment? Now, a diagnosis of chronic Lyme can equate to a psych disorder for some clinicians. Who can we thank for that? Imagine what they could do with a nebulous title like MUS.

Moreover, to claim we have NO diagnostic methods for TBDs...Revisionist reality, anyone?

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