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CDC Persistence Webinar Transcripts and Slides Available

Posted: Sat 5 Jul 2014 7:35
by LHCTom

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Sat 5 Jul 2014 13:39
by duncan
Thanks for posting these, LHCTom. I had listened to the webinar, but was unable to see the powerpoints at the time.

Marques. What a sweetheart.

First of all, I'm pretty sure the consensus in govt circles these days is that it's post-treatment Lyme disease syndrome, or PTLDS, and not post Lyme disease syndrome. The latter appears to me to employ a tactic called an assumptive close that I personally associate with used-car salesmen. Not a good start. In the future, she might want to consider visiting the CDC's website to reference their wording, just to be safe. Not that the CDC hasn't laid a few eggs from time to time.

"Studies of patients with erythema migrans have shown that 0-40% of the patients have persistent or intermittent nonspecific symptoms of mild to moderate intensity 6-24 months after therapy."

This statement is a keeper. I mean, even following on the heels of the post Lyme disease miscue. A small thing: 0-40% - most individuals I know would say "up to 40%", unless, possibly, one were deliberately trying to downplay the range (a natural tendency, right or wrong, is to seek the average point, which would be 20%, and which would probably not be accurate.) That is a minor flaw, though, and arguably simply reflective of my idiosyncrasies. Also, I suppose that it could be deemed appropriate if one of those studies she referenced actually found no patients with continued symptoms.

Next: nonspecific symptoms. Sigh. As opposed to lab results like C6 peptide or ELISA or WB or PCR. Symptoms vs. lab findings. Other than EM, what symptoms are specific to Lyme? Not arthritic knees, or doctors back in the 70's wouldn't have been so inclined to characterize those kids with juvenile RA. And doesn't the phrase "nonspecific symptoms" have such a harmless ring to it? Yet, if I have a nasty case of the flu, or if if I have the early stages of lung cancer, aren't the symptoms I report nonspecific, even though the former might confine me to a bed for several days, and the latter might kill me eventually? But I suppose this is medical speak, so one must make allowances.

"...of mild to moderate intensity..." My, my. Either she is being very literal referring to studies which could not possibly be representative of the entire chronic or PTLDS population, or...Well, let me just opine that defining the symptoms of the entire PTLDS or chronic Lyme patient community as being confined to "mild to moderate" is - at best - flat out wrong. WRONG. This is how the head of the NIH Lyme team characterizes the patients she is meant to be researching? I mean, maybe she just doesn't get it, or - but I would imagine she must be seeing patients that are debilitated after Lyme treatments, so she should be aware of the true range of symptoms...I find this puzzling.

Here's the deal as I see it: if anybody is going to try to characterize a patient population, if their charter includes that goal, GET THE SYMPTOMS THAT IN PART DEFINE THAT POPULATION , THEIR NATURE AND INTENSITY AND DURATION, RIGHT. Or find another pastime.

"...6 - 24 months after therapy." Ah, so there is a ceiling, a limit to how long symptoms may endure? I suppose she is referencing solely to some specific studies. But projecting that little gem in powerpoint format where it might get lots of additional coverage out of context, might that not run the risk of being misinterpreted? Or does she actually believe that there is a two-year limit to the PTLDS warranty?

I wish I had been able to figure out how to post questions as the webinar was happening. I have no excuse because, evidently, not only are my cognitive issues not anything worse than a moderate inconvenience, but since I've been sick from Lyme for more that 24 months after therapy, apparently I have no symptoms anyway.

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Sat 5 Jul 2014 16:52
by LHCTom
Marques needs to learn how to explain small things and how to write understandable slides. Did she really graduate from college?

I'm still trying to figure out what qualifies as a positive ID for Marques. If I'm not mistaken, she doesn't trust her own lab PCR and sequencing results unless:

Testing is done twice by IBIS over 8 months with the same results on a 7 gene sequence AND the sequence ( strain ) has never been seen before in her lab. And since her lab probably sees more Borrelia than most labs, consider how many strains are suspect for contamination because they were in the Lab once. Isn't that setting the bar terribly high? Doesn't that say she doesn't trust results from her own lab due to contamination risk. If most researchers set their "no contamination" bar that high for identification, nobody would ever bother running a test in a lab that had a Borrelia or microbe under study sample in it before. What happened to quality control and cleaning?

This is NOT a complicated study to explain the results. Somehow she manages to really make it difficult to decipher the results. Maybe she just is proud of the groundbreaking study and bandage complexity but doesn't really want to know the results. Does anyone else get that sense? Does it make sense to assign a study to someone who holds near-religious beliefs about what the outcome MUST BE? Or am I just jaded?
Of the 23 participants with Lyme disease who had at least one tick tested, either by protocol 1 or 2,19 were negative, 2 were indeterminate,because we could not rule out laboratory contamination.The ticks from all the healthy volunteers were negative, and all tissues from the SCID mice tested negative by PCR and culture. All the skin biopsies were negative by culture and culture PCR ,and 6 biopsies were tested directly by the IBIS assay were negative.
Ok, in the transcript it says

23 participants
19 negative
--------------
4 = not negative?

2 indeterminate
--------------
2 positive ( sorta)

Maybe the slide will help

• 10 patients with high C6
• 10 patients with PTLDS
• 5 patients with EM after antibiotic therapy
• 1 patient with EM in early treatment (“positive control”)
------------
25 + 1 positive control

Nobody dropped out but it adds up to 26, not 23?

Maybe there is an overlap she fails to mention - oh well...

Back to slides

23 participants with Lyme disease had at least one tick tested.
• 19 negative
• 2 indeterminate (we could not rule out laboratory contamination).
• Ticks from healthy volunteers tested by protocol 1 and 2 were negative.
• All tissues from SCID mice tested negative by PCR and culture.
• All skin biopsies were negative by culture and culture PCR.
• The 6 biopsies tested by direct IA/PC/ESI-MS were negative

I guess the results slide is really the positives slide

She needs to take "Explaining 101" or how to organize a " Power Point for Dummies 101"

So we had 26 but 1 was a positive control

Then it became 23

19 were super negative - "and she smiled"
2 were positive but ruled probably contamination so "indeterminate" sounds better
1 regular participant was positive because IBIS found a unique genotype twice 8 months apart
1 positive control was sorta begrudgingly positive at 4 abx days but negative later
-------
23

Is it me or does Marques sound really proud of this study and their hard work having broken new scientific ground with cool tick packaging but not to thrilled by having one positive. Maybe her overly harsh contamination rules was an attempt to beat 3+1 positives down to 1+1 maybe. But the control doesn't count since she emphasizes they had to collect at 4 days into treatment - well under IDSA recommended length.

I guess this what you get with government employees for life. If she made this presentation to a top CEO in the private world, it wouldn't have gone terribly well. What does that say about the CDC and NIH. I bet her boss is worse so it goes unnoticed.

We had two participants who we considered that they had positive xenodiagnostic results. One was our positive control, the patient with erythema migrans who had started therapy for doxycycline at the same time that the ticks were placed. This participant was completing the fourth day of antibiotic therapy when the ticks were collected. Ticks from this individual tested positive by the IBIS assay on two separate specimens. One from a single tick and one from a pool of three ticks. The single tick was positive for two B. burgdorferi genotypes. Six other ticks on this participant tested negative by culture and PCR. The skin biopsy was negative. This individual repeated xenodiagnostic procedures 7 months after completing the antibiotic therapy, and 10 ticks were tested using the IBIS assay and were negative. One patient with post-treatment Lyme disease syndrome was considered positive in two separate xenodiagnostic procedures, performed 8 months apart. From the first xenodiagnostic procedure, one nymph was found to be positive by PCR of the nymph lysate culture. The positive PCR of this culture was confirmed by additional PCRs, and the DNA extracted was then tested by IBIS and identified it as a novel genotype of B. burgdorferi. Four other nymphs were negative in all testing, and all tissues from the SCID mice, on which the nymphs were fed were negative. Xenodiagnosis was repeated 8 months later. At that time, only two fed ticks were recovered.
"Sigh"
I want to point out that ticks are not simply “crawling needles and syringes”. Tick saliva has been shown to be a chemo-attractant for the organism, and feeding ticks have the potential to aggregate and concentrate bacteria from a wide area, improving sensitivity.
Does this make any sense? This whole crazy study is founded on the "chemo-attractant" premise in the quote above. How hard would it be to determine what the "chemo-attractant" was? Then one could set patients up with a sterile needle blood bypass with the chemo-attractant and let blood flow through a path created from the chemo-attractant needle to some kind of spirochete filter and then let the blood re-enter. Like a little kidney dialysis machine that traps spirochetes attracted to the chemo-attractant and caught by the filter in a closed loop. It would have the chemo-attractant benefit and be able to filter gallons of blood for months. Sure be less weird than the crazy ticks and clever bandage engineering.

1) Has a chemo-attractant for the microbe in something like a PICC line connection.
2) A blood flow path from chemo-attractant
3) Though a filter or device that traps the microbe but lets the small molecules of blood flow
4) Blood from filter re-enters the system
5) Filter is removed and tested routinely

I'm not a medical system designer but it sure seems something along these lines would be much better than real ticks....

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Sat 5 Jul 2014 22:13
by Camp Other
duncan wrote:Thanks for posting these, LHCTom. I had listened to the webinar, but was unable to see the powerpoints at the time.
Yeah, I'm finding them useful too - thanks, LHCTom.

duncan wrote: Marques. What a sweetheart.

First of all, I'm pretty sure the consensus in govt circles these days is that it's post-treatment Lyme disease syndrome, or PTLDS, and not post Lyme disease syndrome. The latter appears to me to employ a tactic called an assumptive close that I personally associate with used-car salesmen. Not a good start. In the future, she might want to consider visiting the CDC's website to reference their wording, just to be safe. Not that the CDC hasn't laid a few eggs from time to time.
What's wrong with "post-treatment Lyme disease syndrome" or PTLDS? From an outsider's point of view, that's a more "non-partisan" label for the condition which describes what is happening to patients without directly getting into the persistent infection vs. autoimmune disorder debate. The label more or less admits people have ongoing symptoms after initial treatment, period. "post Lyme disease syndrome" or PLDS is very clearly "post" as in "post infection" - not specifically tied to the patient having had at least some treatment.

I don't see it as an assumptive close. I see it as a way for researchers to label the condition without specifically stating it is either caused by a chronic infection or is a post-infectious condition.
duncan wrote: "Studies of patients with erythema migrans have shown that 0-40% of the patients have persistent or intermittent nonspecific symptoms of mild to moderate intensity 6-24 months after therapy."

This statement is a keeper. I mean, even following on the heels of the post Lyme disease miscue. A small thing: 0-40% - most individuals I know would say "up to 40%", unless, possibly, one were deliberately trying to downplay the range (a natural tendency, right or wrong, is to seek the average point, which would be 20%, and which would probably not be accurate.) That is a minor flaw, though, and arguably simply reflective of my idiosyncrasies. Also, I suppose that it could be deemed appropriate if one of those studies she referenced actually found no patients with continued symptoms.
40%. Even UP TO 40%... That's a big deal. That's a sizable percentage of patients who are affected. From which studies is that 40% derived?

This is something I've been asking frequently: When you go to the CDC's post treatment Lyme disease main web page, it states 10-20% of Lyme disease patients develop persisting symptoms after initial treatment. I've quoted that a lot in calling attention to the problem, especially an audience which is particularly more likely to at first listen to the CDC's statistics and give them weight. 1 in 5 patients is still a pretty high percentage of patients. Yet the CDC - at least last I looked - did not offer a specific citation source for that 10-20%. I continue to look - let me know if you know what it is.

But 30, even 40%? That's astounding. And yet the IDSA Lyme disease guidelines panel has made the claim that their guidelines are evidence-based treatments based on the best science available? If so... Why are up to 40% of patients (and yes, I am using that phrasing rather than 0-40% - if the IDSA Lyme disease guidelines panel can state up to 10% of early acute cases of Lyme disease result in treatment failures, I can use up to 40% have persisting symptoms) having persisting symptoms and why isn't there an evidence-based treatment plan for them?
duncan wrote: Next: nonspecific symptoms. Sigh. As opposed to lab results like C6 peptide or ELISA or WB or PCR. Symptoms vs. lab findings. Other than EM, what symptoms are specific to Lyme? Not arthritic knees, or doctors back in the 70's wouldn't have been so inclined to characterize those kids with juvenile RA. And doesn't the phrase "nonspecific symptoms" have such a harmless ring to it? Yet, if I have a nasty case of the flu, or if if I have the early stages of lung cancer, aren't the symptoms I report nonspecific, even though the former might confine me to a bed for several days, and the latter might kill me eventually? But I suppose this is medical speak, so one must make allowances.
Well, the flu can kill around 35,000 people a year. Cytokine storms, viral pneumonia especially in those with asthma/COPD/obesity, and bacterial pneumonia as a secondary infection to flu can do you in. So I don't take the flu lightly. Cancer can vary in its being nasty - but you're right, lung cancer can have nonspecific symptoms and it might kill you, too.

Lots of conditions have non-specific symptoms. Lots of conditions have symptoms which overlap. This is why a good doctor will not only rely on playing some odds game of statistical probabilities as to what some condition is but also be sure to rule out the more troubling conditions that something might be. Some doctors use their deductive reasoning and are great diagnosticians; great sleuths. Some aren't. And some are relying on outdated notions of how common tickborne diseases are - and perhaps in some cases, limited conceptions of different presentations of each tickborne disease or how they could manifest if the patient is co-infected.
duncan wrote: "...of mild to moderate intensity..." My, my. Either she is being very literal referring to studies which could not possibly be representative of the entire chronic or PTLDS population, or...Well, let me just opine that defining the symptoms of the entire PTLDS or chronic Lyme patient community as being confined to "mild to moderate" is - at best - flat out wrong. WRONG. This is how the head of the NIH Lyme team characterizes the patients she is meant to be researching? I mean, maybe she just doesn't get it, or - but I would imagine she must be seeing patients that are debilitated after Lyme treatments, so she should be aware of the true range of symptoms...I find this puzzling.
The entire IDSA Lyme disease guidelines passage stating the "aches and pains of daily living" has to go. It's not truly descriptive of the experience and symptoms patients with persisting symptoms have. Even back in the time the 2006 guidelines were written, we already had the Klempner study and a statement that those patients with chronic Lyme disease (also called PTLDS) who were most severely affected had a condition which was on par with congestive heart failure and osteoarthritis in terms of disability and functionality. Yes, there are CLD/PTLD patients who are not as severely affected as the most severe, but they are still at least moderately to severely affected in some way(s). Those who are mildly affected may not even know what's wrong and just pop an ibuprofen and get on with their day.

At least Dr. Aucott at Johns Hopkins has been working to characterize chronic Lyme/PTLD patients and their functionality, quality of life measures and symptoms. At least we have a more recent study like the one from CT demonstrating that those with persisting symptoms and acute symptoms related to Lyme disease overlap greatly. These things need to to be defined, described, quantified - and basically researched - and not put down to "the aches and pains of daily living". To which I said back when I first read that, "WTAF?", because I was so dysfunctional the first time I read the 2006 guidelines that I wanted to throw something. I might have at the time. And I'm still not 100% well, and I and others near me are finding new problems I've developed as I go along - even if some of my original symptoms diminished or went away. I'm not back to baseline.
duncan wrote: Here's the deal as I see it: if anybody is going to try to characterize a patient population, if their charter includes that goal, GET THE SYMPTOMS THAT IN PART DEFINE THAT POPULATION , THEIR NATURE AND INTENSITY AND DURATION, RIGHT. Or find another pastime.
Yes. This.
duncan wrote: "...6 - 24 months after therapy." Ah, so there is a ceiling, a limit to how long symptoms may endure? I suppose she is referencing solely to some specific studies. But projecting that little gem in powerpoint format where it might get lots of additional coverage out of context, might that not run the risk of being misinterpreted? Or does she actually believe that there is a two-year limit to the PTLDS warranty?
Maybe some people get it for only 6 months, a year, two years... Well, let's just break that bell curve, because it is much longer than two years for me, too. And the fact that symptoms have been so disruptive for as long as they have been is what has completely screwed up my life, career and finances and social life as well. Plans? Ha. Right.
duncan wrote: I wish I had been able to figure out how to post questions as the webinar was happening. I have no excuse because, evidently, not only are my cognitive issues not anything worse than a moderate inconvenience, but since I've been sick from Lyme for more that 24 months after therapy, apparently I have no symptoms anyway.
I couldn't even get through to be able to listen let alone post questions. Someone knew of my plight and made an audio recording of the webinar for me - at least part of it. Having the transcript and slides now helps me in making a writeup of the event.

I hear you on being told you can't have symptoms after 24 months after therapy... I'm in the same boat. As for cognitive issues not being anything worse than a moderate inconvenience... If they're anything like mine, they are pretty damned inconvenient if they affect one's ability to communicate and maintain relationships and remember what you were doing and whenever you tried to learn something new.
:bonk: <-- This is my brain on Lyme. Any questions?

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Sat 5 Jul 2014 23:24
by duncan
Camp Other, I probably worded my paragraph about PTLDS vs post-lyme disease syndrome poorly. I prefer PTLDS if only because it appears to at least make an attempt at accuracy, although I doubt if that was its intent (I think it was a compromise reached under duress, personally).

I have to disagree with you about post-lyme disease syndrome. Intent aside for the moment, clearly PLDS will indicate to far too many that Lyme has been resolved. Regardless of the merits to the debate as to whether Bb survives after recommended treatment, the inescapable fact is there IS a debate, and a frequently contentious one. In my opinion it is at best disingenuous for any public organization to employ a label that suggests there is an across-the-board consensus that the disease has been eradicated. That consensus does not exist.

Now, whether or not it's an assumptive close has everything to do with intent. As I am a slave to cynicism, I am inclined to think who-ever coined the name had a pretty good idea what the effect would be. :) But I concede I may be too negative about this.

BTW, I am also not satisfied with post-treatment Lyme disease syndrome. And for much the same reason I don't like PLDS. PTLDS implies an effective treatment, and there too you will find controversy as to what constitutes effective treatment. This has not been conclusively resolved. Just because one group thinks it is so, and yes, it is a large and influential group, does not make it necessarily so.

The easy fix? It's Lyme. Period.

LHCTom, I don't think the NIH Lyme team uses on-site labs much in Bethesda (where Marques is based). I think they outsource most if not all of it, right? Maybe they send some really sensitive stuff off to Colorado. But I'm not sure on either count.

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Sun 6 Jul 2014 17:02
by lou
It comes down to the usual choice with people like Marques: are they just stupid, or are they liars? When I started down the lyme road more than 15 years ago (so much for the 2 year warranty), I leaned toward stupid, now I am more inclined to the lying explanation for their behavior.

Marques has seen a lot of lyme patients. She knows better. But this is job security. If NIH were serious about this and truly looking for answers and sent out that signal in grants and everywhere else, then Marques and her ilk would be saying something quite different, and would not obfuscate to confuse and pretend to be doing science. If you start out honest and competent in this field, you will not last. So then you get your Ph.D. in obfuscation and foot dragging.

And BTW, I think at one point, she was sending material to the BumSteere to test. She certainly has published with all the bad guys: Wormser, Steere, etc. And in the article below, she thanks Phil Baker for his guidance! And we know just where that guidance would take a person. Also in the article below, it is not possible, at least for me, to tell who was doing the testing and where.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3122515/

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Sun 6 Jul 2014 19:00
by duncan
Labs Marques and company have used - I believe - include Imugen, Mayo (Rochester, MN), StoneyBrook, Immunetics, to name a few. I could be wrong. And even if correct, it doesn't mean she tapped into any of the above for the Xeno effort.

For some reason I doubt that Igenex is on that list... ;)

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Wed 9 Jul 2014 23:34
by tosho
lou wrote:It comes down to the usual choice with people like Marques: are they just stupid, or are they liars?
After watching materials like this I would say liars:

http://www.healio.com/pediatrics/emergi ... me-disease

http://www.youtube.com/watch?v=PzUtG_qosJg

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Thu 10 Jul 2014 1:59
by velvetmagnetta
"Health-care seeking behaviors"?

Is that anything like "sickness behavior"?

Re: CDC Persistence Webinar Transcripts and Slides Available

Posted: Thu 10 Jul 2014 12:40
by duncan
"Health care seeking behavior." Sickness behavior speaks to symptoms, real or perceived. It has psychological overtones. But health care seeking behavior...that's a bit different sounding, isn't it?

Healthcare seeking behavior. As in going to medical facilities? As in incurring costs that insurance companies will have to absorb? Or accessing state-sponsored health care??

I don't recall seeing that sort of reference before. It seems oddly, uh, specific, doesn't it?

I wonder what Shapiro was thinking about.