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Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Tue 19 Jan 2016 3:35
by Henry
What bothers me is how you and others, in the absence of an objective test for Lyme disease -- or at least one that you find acceptable-- are so sure that you have Lyme disease, and not some other medical condition with similar symptoms. Under such circumstances, treating such patients as though they had Lyme disease would be of no value.

I am quite willing to accept the fact that these patients are genuinely ill and have a medical problem that deserves proper attention and care. However, it would not be fair to say that the currently used diagnostic procedures are "bogus" and that the recommended regimens for treating Lyme disease are inadequate when both do not give positive or beneficial results when used in patients who may not have Lyme disease in the first place; there is abundant evidence to indicate that both are effective and beneficial when used in patients that have been well-characterized as having Lyme disease. For all we know, the former may not even have a TBD at all since the precise nature of their illness remains to be determined. That is why I suggested, in a previous posting, that this as yet-to-be defined disease be given another name so that the slate can be "wiped clean" and these patient examined and characterized clinically in a multidisciplinary manner -- looking at their condition from several different angles, as has been suggested by the IOM. The NIH has just started to implement such a program, which seems like a reasonable approach to take. It will include not only patients with "chronic Lyme disease" but also patients with fibromyalgia, chronic fatigue syndrome, and patients with other unexplained medical conditions. I know there are many primary care physicians who are in a quandary as to how to treat these types of patients. Hopefully, a program like this will be helpful. It makes good sense.

Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Tue 19 Jan 2016 4:12
by Lorima
My family patients have Bb-specific bands on Western blots - just not the exact combination that satisfies the arbitrary (not objective) Dearborn/Steere/CDC surveillance criteria, which inexplicably morphed into a diagnostic requirement.

The patients live in the Boston area and their hobbies are outdoor activities.

Their illnesses match Steere et al's descriptions of neurological LD from the 1980s. One had Bell's palsy. The other had sudden onset knee and hip pain that resolved after a few months, at age 35.

Both of their primary care MDs immediately suspected LD. But, they immediately ruled out LD, according to guidelines, by negative ELISA during late stage.

No other cause was found for the progressing neurological illnesses despite extensive testing.

[The pronoun "we", below, refers to my family members]

1) Why would we believe the LD dogma, including the infallibility of the IDSA treatment regimen, after reading the LD foundational literature and realizing that it does not make sense?

2) Why would we not think they have LD, given that their presentation was classic, and they have objective evidence of infection (Bb-specific antibodies) and high risk by geography and activity?

3) Why would we expect that their late-diagnosed LD would be easy to cure, once we have assimilated the literature on dissemination and persistence in untreated animals and humans?

4) Why would we ignore reports from educated, intelligent people who share our experience, like those at LNE?

Once the currently dominating "experts" have been discredited, by careful reading of their own bad publications and unacceptably aggressive promotion of their poorly supported assertions, there is no reason to be biased in favor of any of their pronouncements.

There is more than sufficient reason to disbelieve them.

The medical culture of conformity, and of not actually reading and analyzing published data, explains why the bad science has not been detected and corrected.

The experts' pretending that the disease is simple and completely understood, and asserting that those who say otherwise are "sick" (to use Henry's term), thus quashing reasonable scientific discussion and dissent, has

blocked progress in the field for decades. That is why patients are angrily protesting.

These are rhetorical questions. No need to answer, though you can if you want.

Edited to try to make it possible for Henry to follow, by bolding and numbering main points.

Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Thu 28 Jan 2016 1:22
by lou
Why even bother to reply to trolls like these two? He who would try to teach a pig to dance will fail and will annoy the pig.

Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Thu 28 Jan 2016 1:59
by Lorima
Yes, I've often thought that. They are trolls, but they are well-connected trolls involved in keeping the official charade going.

I just like to show how simple it can be, to recognize missed Lyme diagnoses, once you know the 2T test is grossly insensitive at most points in the disease process.

Doctors often say that without the 2T test (or the C6, which I think is just as bad), there would be no way for them to diagnose. (That's a ridiculous argument, of course; it's better to have no test than a fake test.)

But so often it's easy to diagnose using fully reported Western blots, classic presentation, and geographical exposure. Yet even those "easy" cases go undiagnosed.

Now help me get that pig to do-si-so.
Or at least fall on his face in public, trying.

Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Fri 29 Jan 2016 11:24
by duncan
Lorima, I well know the limitations of the conventional ELISA and the WB requirements.

I know I should know the weaknesses of the C6; I'm pretty sure I once did. But I've grown so used to endorsing that particular test because my results cannot be easily explained away (as you know), that I've lost touch with its flaws.

I want to be articulate about its strengths and weaknesses, just as with the other Lyme tests. Would you please briefly explain why it might come up short? If I don't know why it fails some, then I should not be advocating it for people.

I was going to pm you, but I think it might be good to have out there for others to familiarize themselves with.

Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Sun 31 Jan 2016 16:54
by Lorima
Ideally, I would answer this by doing a lit review on C6, from the perspective of what we know about how 2T testing "validation" was faked. I don't know when I'll find the time to do that, though. So here is an interim response.

I have theoretical concerns about using response to a single peptide epitope to rule out infection/exposure for an organism as complex and varied as Bbsl, or even Bbss. I would need strong evidence from unbiased sources to accept that such an assay is adequately sensitive, and we don't have that.

But the clincher for me is that many of the same academics who think 2T "works" for ruling out non-early LD, are not complaining that C6 is giving too many false positives. If C6 were adequately sensitive to pick up non-arthritic late stage LD, you would hear the AHILD group howling about false positives.

I think that, just as among authentically infected patients, you need an unusually high level of Bb antibodies to be consistently positive on 2T, you probably need an unusually high level of antibody production to be positive on the C6 test, in late stage. It may (or may not) be the best single peptide to use for this, but it's a big leap to think that any single peptide can do the job well enough for human medicine.

Steere's arthritis patients (at least the ones that he diagnoses, and then sends their serum for addition to the CDC panel of late stage LD sera) are the only example I know of, who typically have these persistent high, varied antibody levels.

Duncan, you are an interesting case of a neurological Lyme patient who has a consistently positive 2T. But I don't think that is typical, and I think the lower levels of antibodies most non-arthritic LD patients have, is one factor in, say, Wormser's denial of late stage Lyme encephalopathy. He may be able to get that to catch on, because of the insensitivity of both 2T and of C6 in that manifestation of the infection.

Western blots with all bands reported are much more likely to find the particular Bb-specific antibodies that a late stage neuro patient is making. That is obvious both on theoretical grounds, and, I'm convinced, in practice. Good LLMDs get this, but of course IDSA would say there are too many "false positives" and it is not standardized or "validated" (which is beginning to sound Orwellian to me whenever I see it, as I continue to study bad science in medicine). Regular MDs wouldn't like it because they want a yes/no answer that requires no effort on their part.

Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Sun 31 Jan 2016 17:25
by duncan
Understood. Thanks, Lorima, for your detailed response.

Relative to neurological Lyme, the problem may not be so much with the serological ELISA's and the WB (although those are certainly problematic), as it is with the insistence on using what arguably is inadequate testing on CSF to verify NB.

The pattern seems to be deny, deny, deny. The sole area where that pattern has failed has been the single symptom that is glaringly overt, i.e., Lyme arthritis and swollen joints.

Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Mon 1 Feb 2016 15:34
by Lorima
Funny comment from a reader of Dr. Daniel Cameron's excellent blog: ... halopathy/
Rob 01/29/2016 (4:37 am)

Many physicians now suffer from a syndrome known as “Von Wormser By Proxy”. This syndrome manifests when a patient has numerous symptoms of Lyme Disease but no matter how obvious, the Doctor just can’t confirm the diagnosis.

Re: New: Identification of Additional Anti-Persister Activity from an FDA Drug Library

Posted: Mon 7 Mar 2016 3:12
by ChronicLyme19