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Re: False and Misleading Information about Lyme Disease.

Posted: Fri 3 Mar 2017 19:49
by duncan
Until treatment has a 100% efficacy rate, there clearly is more to be said - and I don't think it a stretch to speculate that the NIH, and the CDC, and those that set Lyme policy at the IDSA, know this.

The fact remains that the diagnostic criteria are insufficient to conclusively demonstrate an active infection in the vast majority of cases that satisfy the strict Lyme diagnostic criteria required to be reported to local health authorities as an actual case of Lyme - and that is an indisputable fact. Yet it remains the rule in some circles that individuals suspected of Bb pass the 2T. It's not my rule, mind you. Many believe this rule is outrageous if only because of the potential risk associated with missing infections.

The bar has been set so high that arguably many who have Lyme and fail the recommended 2T get screwed. This contention is common knowledge, and an entire community of clinicians has arisen because of the purported deficits in testing. There is a growing association of doctors who believe people are being infected and that the current IDSA recommended scheme isn't up to the task of discerning many of their infections. Some states in the US are also convinced, and have in fact passed legislature requiring doctors notify patients that just because they test negative on the 2T does not necessarily mean they don't have Lyme. I believe there are also reports that more and more doctors are deviating from IDSA recommended treatment protocol because they simply don't feel that therapy to be sufficient at times.

So it is all the more unconscionable that anyone would ever deny a Lyme diagnosis for the few who actually are able to meet those requirements after a treatment that even the IDSA readily admits to not being failsafe. And now with the additional cause for concerns manifested in the three distinct persister studies, it is perplexing that anyone would be resistant to the notion of chronicity in Lyme, let alone ardently protest it.The only ones that I can imagine that benefit from making it virtually impossible for people suffering from Lyme infections to be diagnosed as such are insurance concerns.

These are not my rules. I don't agree with them, and like many, I am deeply concerned about what some believe are gaping holes in the 2T. But I think it even more telling when I see the resistance to diagnosing Borrelia EVEN WHEN SUFFERERS SATISFY these controversial "requirements", and I worry it might speak to something other than the needs of the patient community.

Which makes this "false and misleading" article all the more ironic - and alarming.

Re: False and Misleading Information about Lyme Disease.

Posted: Fri 3 Mar 2017 21:17
by Henry
Since you don't accept the results of 2T testing and in the absence of an alternative "fool proof" diagnostic test, how can you prove that you have Lyme disease -- except to say that you have it? What if you are wrong and have some other medical condition that, once treated diagnosed and treated correctly, can be cured? Wouldn't you be wasting your time and money being treated for the Lyme disease that you may not even have?

Re: False and Misleading Information about Lyme Disease.

Posted: Fri 3 Mar 2017 21:23
by duncan
Yes. I agree with you; there are two sides to that coin. So I DO look at other possibilities, and I also factor in other metrics and considerations - like the C6 and RISING titers vs declining or stable values, etc.

But in the absence of a culture test that always works, you need to embrace the whole differential diagnosis thing, or at least I try to subscribe to it.

You have to weigh all the evidence to the best of your ability, and in the end, you might still get it wrong.

But you do go where the evidence leads you.

Henry, you realize that if you fully believed in the infallibility of the 2T, you would have to say I had active Lyme, right? And that I am essentially accepting not just the 2T in my case, but the C6 as well? I am one of the fortunate ones whose immune system is still robust enough or hasn't been fooled yet by Bb's repertoire of immune evasion antics, or hasn't crumbled (yet) - to demonstrate infection even with a metric I fear is suspect.

Re: False and Misleading Information about Lyme Disease.

Posted: Fri 3 Mar 2017 22:28
by Henry
And if you have received the IDSA recommended treatment -- more than once if I'm not mistaken-- then you should have been cured of active infection. In your case, seropositivity is due to past exposure, a phenomenon that is quite common with other infections.

Re: False and Misleading Information about Lyme Disease.

Posted: Fri 3 Mar 2017 22:35
by duncan
You are incorrect in at least part of your claims. Even the IDSA will only commit to a "majority" of patients are cured, but as you well know studies range from up to 5% to up to 20% - and some higher - of patients will not be cured.

As for seropositivity, go take a quick read of your IDSA manual. Lyme titers post treatment may - theoretically - remain positive after treatment, but they should typically decline even if they do remain positive. Mine not only usually are not in decline, they are frequently rising.

You are hasty in your pronouncements sometimes, Henry. :)

Re: False and Misleading Information about Lyme Disease.

Posted: Sat 4 Mar 2017 22:33
by lou
Duncan, you never cease to amaze me. How you have the patience to engage with these trolls.

Now if we just had the reason why they would hang around here, being well. Either they are the same people that are publishing the trash that was the subject of this thread, or we should be getting them checked against the psychopath criteria. One is as bad as the other. There is definitely evil in the world.

Re: False and Misleading Information about Lyme Disease.

Posted: Sun 5 Mar 2017 16:52
by dlf
Millions of dollars of NIH grants have been supporting unverifiable opinions and screeds that attack those concerned and affected by complicated and persistent cases of Lyme disease. The director of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes and founder of the Global Network on Institutional Discrimination recently wrote a letter to the U.S. Department of Health and Human Services about this issue.
The person who wrote the letter is Jenna Luché-Thayer. The full content is included in the following blog post:

Saturday, 04 March 2017 20:09
Fake news or research misconduct?

https://huib.me/en/blog/item/76-fake-ne ... misconduct

I have included a few quotes from the blog, but would encourage everyone to read the full text.
I understand this article, False and Misleading Information about Lyme Disease (cited as Shapiro ED, Baker PJ, Wormser GP, False and Misleading Information about Lyme Disease, The American Journal of Medicine (2017), doi: 10.1016/j.amjmed.2017.01.030.) is considered a research article supported by a NIH translational research grant.

Research, as defined by NIH, "means a systematic experiment, study, evaluation, demonstration or survey designed to develop or contribute to general knowledge (basic research) or specific knowledge (applied research) relating broadly to public health by establishing, discovering, developing, elucidating or confirming information about, or the underlying mechanism relating to, biological causes, functions or effects, diseases, treatments, or related matters to be studied."

At the bottom of this article is the following disclosure: Funding: This publication was made possible in part by support from CTSA Grant Number UL1 TR001863 from the National Center for Advancing Translational Science (NCATS), a component of the National Institutes of Health (NIH), to EDS [ED Shapiro]. The findings and conclusions of this paper are those of the authors and do not necessarily represent the official position of the NIH.

This article meets none of the research grant objectives. However, it certainly appears to show 'research misconduct' according to CFR › Title 42 › Chapter I › Subchapter H › Part 93 › Subpart A › Section 93.103 or 42 CFR 93.103 - Research misconduct.

"Research misconduct means fabrication, falsification, or plagiarism in proposing, performing, or reviewing research, or in reporting research results.

(a) Fabrication is making up data or results and recording or reporting them.

(b) Falsification is manipulating research materials, equipment, or processes, or changing or omitting data or results such that the research is not accurately represented in the research record."

The research article by Shapiro, Baker and Wormser makes numerous fabrications and reports of false data:
In this letter Jenna Luché-Thayer outlines 10 specific areas where the "research" article makes unsupported claims or
where the data has been fabricated or falsified. Although each of these have validity, I am including just one of these for now because this seems to be a running theme for hv808ct and Henry that has cropped up yet again in this forum thread......
3. "Although there are multiple definitions of chronic Lyme disease, we are using the term to refer to patients with persistent, unexplained subjective symptoms, with no documented history of Lyme disease and without credible laboratory evidence --past or present-- of infection with Borrelia burgdorferi, the bacterium that causes Lyme disease."

The authors define the chronic Lyme term as though it is not a real medical condition. The authors then ineptly promote the slanderous and indefensible falsehood that clinicians and patients who use the term chronic Lyme are using the authors' definition. There is no proof of this fantasy.
The authors need to understand that there is likely not one person in the Lyme community who thinks that the definition of chronic Lyme as outlined in their article has validity, applies to real life patients, or has any merit at all.

Re: False and Misleading Information about Lyme Disease.

Posted: Mon 6 Mar 2017 15:37
by hv808ct
by dlf » Sun 5 Mar 2017 16:52

Millions of dollars of NIH grants have been supporting unverifiable opinions and screeds that attack those concerned and affected by complicated and persistent cases of Lyme disease. The director of the Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes and founder of the Global Network on Institutional Discrimination recently wrote a letter to the U.S. Department of Health and Human Services about this issue.

The person who wrote the letter is Jenna Luché-Thayer. The full content is included in the following blog post:

Saturday, 04 March 2017 20:09
Fake news or research misconduct?

https://huib.me/en/blog/item/76-fake-ne ... misconduct
Jesus, give it a rest.

When the B-W-S paper finally is published in hard-copy it will be listed under ‘editorials’ or ‘commentaries’ and not as original research.

As for the UL1 grant, it’s for clinical and translational research and is administratively linked to another funded project or projects. Probably Shapiro is on one of those grants, probably for X% effort, and therefore drawing some salary from it. So he listed it as the source of some of his time.

As for Mr. J. Luche-Thayer, there are plenty of ICD codes for Lyme disease (http://www.icd10data.com/ICD10CM/Codes/ ... 69-/A69.20 ), but no imaginary codes for imaginary symptoms or infections. I think those are listed separately under psychiatric codes.

Mr. L-T writes, “I have spent over 250,000 hours 'studying' Lyme, which is said to make me an expert on the subject.” No, that makes him a nut with access to Google. “250,000 hours” also works out to 28.5 years of Googling, which I think is longer than Google has been around, and about the same amount of time I spent getting a doctorate, doing a post-doc and a fellowship, and then working a career.

Access to information is meaningless if you don’t understand what it is you’re accessing.

Re: False and Misleading Information about Lyme Disease.

Posted: Mon 6 Mar 2017 22:29
by nnecker
dlf said:
The authors need to understand that there is likely not one person in the Lyme community who thinks that the definition of chronic Lyme as outlined in their article has validity, applies to real life patients, or has any merit at all.
Please,you're so full of it,it's coming out of your ears.No wonder when Henry and hv808ct don't post anything,this place is deader then a doornail.Go and write a book or something.

Re: False and Misleading Information about Lyme Disease.

Posted: Mon 6 Mar 2017 23:22
by Henry
Although there are multiple definitions of chronic Lyme disease, we are using the term to refer to patients with persistent, unexplained subjective symptoms, with no documented history of Lyme disease and without credible laboratory evidence --past or present-- of infection with Borrelia burgdorferi, the bacterium that causes Lyme disease."
To those who believe that patients such as those described above fit the criteria for chronic Lyme disease, what objective test criteria are used to make a diagnosis of chronic Lyme disease? Is their diagnosis based on general, non-specific symptoms alone, such as those noted in the work cited in references #1 and #2 of the Shapiro et al. paper? If that is the case, then their only diagnostic criterium is only that they say such patients have chronic Lyme disease, i.e., trust me-- I know it when I see it. Under such circumstances, what is the rationale for any treatment regimen one might propose? How does one treat a disease that may not even exist in the first place? What folly!!! Only a fool would believe such nonsense.