CDC Persistence Webinar Transcripts and Slides Available
Posted: Sat 5 Jul 2014 7:35
LymeNet Europe Forum
Ok, in the transcript it saysOf 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.
"Sigh"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.
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.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.
Yeah, I'm finding them useful too - thanks, LHCTom.duncan wrote:Thanks for posting these, LHCTom. I had listened to the webinar, but was unable to see the powerpoints at the 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.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.
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?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.
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.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.
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.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.
Yes. This.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.
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: "...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 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.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.
After watching materials like this I would say liars:lou wrote:It comes down to the usual choice with people like Marques: are they just stupid, or are they liars?