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Author Topic: Fraud of IDSA Lyme Guidelines Author Exposed!
Eight Legs Bad
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Dear friends,

Please circulate the following widely. Dr. Bockenstedt should not be allowed to get away with this fraudulent behaviour. If unable to view the complete article/images below, the complete text and accompanying images can also be found at

http://www.elenacook.org/macdonaldjci2012.html

Best regards,
Elena

--------
from the Lyme Disease website of Elena Cook

Lyme borrelia biofilms expert Dr. Alan Macdonald writes to the Journal of Clinical Investigation to protest as...

IDSA Guidelines Author Bockenstedt Contravenes Regulations to Evade Verification of her Findings


by Elena Cook
Background

Dr Linda Bockenstedt is a Yale-based author of the deeply-flawed Lyme Disease guidelines issued by IDSA in 2006. Recently, she published a study purporting to show that signs of persisting Borrelia burgdorferi in antibiotic-treated mice (and, by implication, in humans with chronic Lyme Disease), were nothing more than the remnants of dead bacteria (1). She did not explain why this "debris" should, exceptionally, resist all normal immune mechanisms for clearing dead microbe remnants in a mammalian host.

Images accompanying her publication attracted the attention of Dr Alan B. Macdonald, who is currently researching Biofilms of Borrelia along with Dr Eva Sapi and her team at University of New Haven, Connecticut. This collaboration recently resulted in the first-ever study demonstrating Biofilm formation by Borrelia burgdorferi in vitro. (2).

Biofilms are highly organised structures produced by microbes on both living and non-living surfaces. One of their main functions is protective; they are notorious for shielding bacteria from harmful environmental influences, including the presence of antibiotics.

Dr. Macdonald believes that the bacteria, clearly seen glowing green in Dr. Bockenstedt's images (due to Green Fluorescent Protein DNA recombinantly inserted into the Lyme bacteria's infectivity plasmid Cp26) represents a mixture of live and possibly dead Borrelia biofilm community members in the mouse tissue, as opposed to all completely dead, as she alleges.The term "amorphous globs" used by Dr. Bockenstedt to describe the fluorescent material is unscientific. It has never appeared in any published article in any language describing Borreliosis in any living host.

In her article, Bockenstedt uses arrows to indicate her "amorphous globs" as constituents of "fields or carpets" of Borrelia in the tissues of the mouse, whilst ignoring the fact that spherical (atypical) forms of Borrelia can clearly be seen within!

It is well known that the matrix (non-living structural material of the living biofilm community) is derived from microbes - once living but now dead - which contribute their outer surface glycoprotein "slime layer" and their DNA, (extracellular DNA), possibly also incorporating other microbes within the extracellular matrix. (See image gallery in paper by Sapi et al, referenced below.)

The Borrelia in a biofilm consist of organisms which vary in shape and structure, reflecting the specialisation that takes place within the structure. Spherical forms, such as those visible in the photo published by Bockenstedt, have been shown to be an integral part of a Borrelia biofilm community. Yet Bockenstedt labels this material "amorphous" (ie without shape). That is not what we see when we look carefully at the image material she herself has published (see image included with Dr. Macdonald's letter below).

Because her images so strikingly reproduce the known features of a Borrelia biofilm, Dr. Macdonald wrote to her privately, requesting that she carry out a very simple, dye-based test on the material. The test is inexpensive and easily distinguishes between dead and live micro-organisms. She refused.

Dr. Macdonald then asked her to share some of the mouse tissue from her experiment so that he could perform this test in his own lab.
Once again, Dr. Bockenstedt refused - in flagrant denial of US public health agency regulations, which require taxpayer-funded scientists to make their material available to other researchers for independent verification.

Dr. Bockenstedt's study was funded by the National Institutes for Health (NIH) and the Centre for Disease Control (CDC), but also by the non-profit National Research Fund for Tick-Borne Diseases. Her refusal to share tissue or to perform the simple dye test calls into question her integrity as a scientist.

If Dr. Bockenstedt has nothing to hide,why will she not allow anyone to determine if her "dead" persisting Borrelia are truly "dead"?

Is she afraid that her study will negate the validity of her own recommendations, made in conjunction with the other IDSA Lyme committee members, denying the reality of chronic Lyme Disease? Is she worried that what her own published material shows is actually a biofilm of Borrelia (which now has a precedent in the peer- reviewed literature) and that she may now be obliged to issue a retraction of her manuscript, with its accompanying press releases releases to the national and international media?

Below is the e-letter submitted to the Journal of Clinical Investigation by Dr. Alan Macdonald.

(1)Bockenstedt L. et al Spirochete antigens persist near cartilage after murine Lyme borreliosis therapy DOI 10.1172/JCI 58813
(2)Sapi E. et al. (2012) Characterization of Biofilm Formation by Borrelia burgdorferi In Vitro. PLoS ONE 7(10): e48277. doi:10.1371/journal.pone.0048277
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0048277

Letter Submitted to Journal of Clinical Invesigations by Dr. Alan B. Macdonald
Oct 2012


Title: Biofilms as a differential diagnosis for "Amorphous Globs of Dr Linda Bockenstedt"
Letter:


Dear Dr Bockenstedt,

I remark with great interest your inclusion of the brief discussion of Biofilms of Borrelia burgdorferi in your Discussion section, in connection with possible etiologies for the GFP-emitting "amorphous blobs" of Borrelia burgdorferi in deep dermal sites closely apposed to the articular cartilage of the murine arthritic Lyme arthritis mice.

Our paper [6] describing for the very first time the entity of in vitro Biofilms of Borrelia burgdorferi, and accepted for publication release on the PLOS ONE website during the week Of October 24, 2012, is the first peer reviewed manuscript on Biofilm formation by borrelia of any species. It is indeed fortuitous that we, and you were working with borrelia burgdorferi.

We and you were curious to understand the implications of possible in vivo Borrelia biofilm formation. At the level of verbal definition to fulfill the requisite (Costerton)[Ref 5] definitions for a biofilm community are the following:

1. Specialization of member microbes within the community which set these specialized forms apart from Planktonic forms of the establishing microbe.

2. Investment of the microbial members of the biofilm community by a self generated Extracellular matrix, usually including structural constituents from once living but now dead members of the biofilm community. The presence of free Extracellular DNA derived from once living now dead members of the biofilm community.

3. The existence of microbe density which exceeds the density of Planktonic microbes on an ordinary bacteriologic solid phase medium.

4. The existence of "plumbing networks" (i.e. water channels and channels for waste product elimination) in the biofilm community. (Ref 4)

5. The Resistance to antibiotic killing among specialized members of the biofilm community. (Ref4)

Now which of items 1-5 above are or might be "in play" in your so called "Amorphous Blobs" of GFP-labeled Borrelia burgdorferi in the Lyme arthritic mice?

1. Specialization:

Morphology of the microbes within the so-called "amorphous globs" differs significantly from the corkscrew-shaped forms (Planktonic forms-motile forms) (Ref 4) of Borrelia burgdorferi, which are nicely demonstrated in your supplementary Videos and in Figures 1-5 (Especially in your figures 5A and 5B). You clearly demonstrate "Round bodies" among the members of the Amorphous blobs.

Round form metamorphosis from pre-existing spiral forms of Borrelia burgdorferi has been elegantly demonstrated in the long list of peer reviewed publications by Drs Oystein Brorson and his cousin Dr. Sverre Henning Brorson (Ref 7) using electron Microscopy and Phase contrast microscopy. Round bodies were embraced by the late Dr. Lynn Margulis.(Ref 8)

You specifically took the time and effort to demonstrate the formation of borrelia Round bodies in your attached supplementary videos in still photographs in Figure 5 (5A and 5B) in your manuscript.Non-spiral borrelia - i.e.round body borrelia are indeed legitimate shape shifted forms of the Borrelia genus, and represent a specialization by the well known spiral MOTILE form of Borreliae (Planktonic from of Borrelia).

Round bodies, granular forms, Cell wall deficient forms, and finally spiral or straightened forms of Borrelia are specialized forms of the Planktonic (spiral form). Thanks to the works of Dr Alban and colleagues (Ref 1) at the University of Rhode Island, these vital round body borreliae demonstrate a diverse protein repertoire which differ from spiral forms in their protein "fingerprint" in two-dimensional SDS PAGE gel electrophoresis.(Ref 1)

2. The overall density of borrelia microbes in your "Amorphous blobs" in the murine deep dermis,exceeds by several orders of magnitude, the density of Planktonic (spiral/motile) forms of Borrelia burgdorferi when these are grown on solid media in the Microbiology laboratory ( Preac-Mursic, V. et al)(Ref 9)

3. The assertion that All of the borrelia microbes in the "Amorphous Blobs in murine deep dermis in laboratory induced Chronic Lyme Arthritis" are ALL DEAD and merely represent "debris"....is just that: an assertion, buttressed by what you say are corroborative mRNA supportive data...( not presented in your paper).

I have suggested to you in a personal private communication that the way to establish Live versus Dead borrelia in your "Amorphous Blobs" is to pour some Dye ( Invitrogen ::Live Dead Assay) (Ref 10)(Red=dead, and Green = alive).
You have steadfastly refused to accommodate this quality control procedure, which is fast, cheap, reliable and easily accomplished.

You have refused me tissue from your "amorphous Globs" dermal tissue from murine subjects, so that I might perform this simple quality control step in my own laboratory. Refusal to provide tissue to an outside scientist, is in violation of the guidelines of the NIH and other Federal funding agencies.

Your Research activities were accomplished with the use of public funds. You have an incumbent obligation to provide tissue to outside scientists upon request,to verify your experimental findings.


4. A review of all previously published manuscripts since the 1982 NEJM articles announcing the Spirochetal (Borrelial) etiology of Lyme Disease, performed by me and by pathology colleagues (Ref3) interested in the published peer-reviewed Borrelia pathology manuscripts , which specifically demonstrate with figure illustrations Borrelia burgdorferi in diseased tissues-- Such a comprehensive 30-year literature review by Board Certified Anatomic and Clinical Pathologists--reveals that there has NEVER been published a manuscript which contains images of Borrelia burgdorferi - either Living Borrelia or Dead Borrelia - which are present in mammalian tissue in the densities which were illustrated in your figures 5A and 5B. (Ref 3)

By Density criteria ALONE, these "Amorphous globs" are Biofilm communities in murine tissue, UNTIL PROVEN OTHERWISE.(Ref 4)

I therefore challenge you to voluntarily participate in Quality Control microscopic exercise -- to establish with the LIVE DEAD Invitrogen Kit that ALL of the Borrelia inside of your "Amorphous Blobs" stain Red(=Dead) and that none of the borrelia within your "Amorphous Globs" stains Green in the Invitrogen Live Dead assay.(Ref 10) If you are correct, there is nothing to lose in this quality control exercise.

Respectfully,
Alan B.MacDonald MD, FCAP, FASCP

References:

1. Microbiology. 2000 Jan: 146 ( Pt1):119-27. Serum-starvation-induced changes in protein synthesis and morphology of Borrelia burgdorferi. Alban PS, Johnson PW, Nelson DR. Source Department of Biochemistry, Microbiology, and Molecular Genetics, University of Rhode Island, Kingston R.I. 02881, USA
2.Burgdorfer, W,., Barbour, A.G., Hayes,S.F., Benach, J.L. et al, "Lyme Disease - A Tick borne
Spirochetosis" , Science, 1982:216: 1317-9
3. Duray, Paul Harrison, MD, Complete Bibliography, Pub Med.
4. Montana State University, Center for Biofilm Studies: http://www.biofilm.montana.edu
5. Costerton, William , J. , Complete bibliography ( 600 peer reviewed Biofilm manuscripts), Pub
Med.
6. Sapi, Eva, J, et al, PONE-D-12-11352R2 Characterization of biofilm formation by Borrelia
burgdorferi in vitro :PLOS ONE , 2012, In Press, To be released on the Internet PLOS ONE website in the week of October 24, 2012.
7. Brorson, Oystein and Brorson, Sverre Henning, Complete bibliography, PubMED
8. Brorson, O,... Margulis, Lynn, et al, "Destruction of spirochete Borrelia burgdorferi round-body propagules (RBs) by the antibiotic Tigecycline ", Oystein Brorson, Sverre-Henning Brorson, John Scythes, James MacAllister, Andrew Wiere, and Lynn Margulis
http://www.pnas.org/cgi/content/full/0908236106
9. Preac-Mursic V, Wilske B, Reinhardt S. Eur J Clin Microbiol. Infect Dis. 1991 Dec;10 (12):1076-9.
“Culture of Borrelia burgdorferi on six solid media.-, Source Max von Pettenkofer Institut, Ludwig-Maximillian-Universitat, Munich, Germany.
10. Invitrogen Inc-
http://www.invitrogen.com/site/us/en/home/References/protocols/cell‐and‐tissue‐analysis/flowcytometry‐ protocol/cell‐viability/live‐dead‐fixable‐dead‐cell‐stain‐kits.html
11. Eisendle K, Grabner T, Zelger B.Focus floating microscopy: "Gold standard" for cutaneous borreliosis?, Am J Clin Pathol. 2007 Feb;127(2):213-22.

(Note: Use of boldface, extra spacing and other minor formatting changes mine -EC)

Above: Set of images included by Dr. Macdonald in his letter to Dr. Bockenstedt, sent to JCI, showing the striking resemblance between what she dismissed as shapeless globs and a known Borrelia biofilm. As some resolution may have been lost in transferring this image, interested readers can view the original published by Bockenstedt at http://www.jci.org/articles/view/58813/figure/5. There many round forms can clearly be distinguished in the so-called "glob" labelled "A". (All the green in her image is Borrelia, genetically altered to fluoresce for easy identification.)
Below: The same known Borrelia biofilm reproduced below showing more detail. The use of spectral imaging has clearly brought out the shapes of the Borrelia organisms in photo "A", which appear in red. A few spiral, very many round forms are distinguished from the extracellular matrix (here coloured green) which envelopes them.


IMAGES

A supplementary atlas of Biofilms of Borrelia and related information are available on Dr. Macdonald's two websites at the following URL's:
http://www.alzheimerborreliosis.net


http://www.molecularalzheimer.org
The articles by Elena Cook on this website may be distributed as long as they are reproduced without changes, attributing the author, and the link to the original URL is included.

Disclaimer: Material on this website is intended for informational purposes only. It is not intended as medical advice. For all questions relating to your own health, please consult a qualified medical professional.The site owner is not responsible for the content of external sites.

An attempt has been made to render this website accessible to people with a variety of disabilities. If you are having difficulty using this site, or have suggestions for improving the site's accessibility, please contact me.
Copyright 2012-2013Elena Cook
http://www.elenacook.org/macdonaldjci2012.html

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AuntyLynn
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Go GET 'er Alan!!!
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map1131
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I'm glad to know all I have is amorphous globs floating around in me. I had to look that word amorphous up? Pretty simple matter.

Now if the good doctor will just tell us how to get rid of these amorphous globs? Does she rx a glob buster?

Sometimes you just have to laugh.

Pam

--------------------
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Eight Legs Bad
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Hi Punter,

Regarding the idea of culturing - you need to take on board the fact that biofilm bacteria are likely to be VBNC's (Viable but Non-Cultivatable). See, for example, the quote below from a recent article.

"Viable but non-culturable (VBNC) bacteria are common in nutrient poor and/or stressed environments as planktonic cells and biofilms. This article discusses approaches to researching VBNC bacteria to obtain knowledge that is lacking on their gene expression while in the VBNC state, and when they enter into and then recover from this state, when provided with the necessary nutrients and environmental conditions to support growth and cell division."

Antibiotics are one of the stressors that can cause bacteria to adopt the biofilm strategy for survival. So it would not be surprising if the Bb in the untreated mice (no abx=no stressor)remained in the planktonic (motile spiral)form, and therefore cultivatable, whilst those in the treated group threw up a population of VBNC's...

I think, also, that you have misunderstood the issue at stake here, when you say that culture would be better proof of "persisters" than staining.

In this debate between Dr Bockenstedt and Dr Macdonald, neither side is denying the fact that there are "persisters". The IDSA doctor is arguing however, that the persisters are dead, whereas Dr Macdonald argues that at least some of them alive, and that, moreover, her "globs" are really a biofilm.

As both sides agree the material is Bb (unmistakably so, as it fluoresces green from the Green Fluorescent Protein added to the Bb genome), the only question remaining is "Dead or Alive?". The Invitrogen Dead/Alive stain Dr M is suggesting would settle that question.

It's also interesting that Dr B describes her material as "amorphous" (ie shapeless). To you and I, at first glance, it might appear so. But a highly experienced researcher like Dr Macdonald, who has spent decades looking at Bb under the microscope, saw immediately that what her photo shows is not "shapeless" at all - in fact it is full of small round forms which fluoresce green and so are unquestionably Bb.

Non-microscopists like you and I can see this too, once it is called to our attention.(Please see the photo on my web-page, or, for even sharper resolution, the original in Dr Bockenstedt's paper.)

Elena
ps - I see you're brand new here -well, welcome to LymeNet...I hope you find much practical and emotional support here for your Lyme Disease!

Btw, the informality of you Americans never ceases to amaze me. In this country, we would never refer to one of the IDSA Lyme committee, who are responsible for so much suffering, by their first name. We would refer to her as Dr Bockenstedt (or something much worse), never "Linda". But I guess it's different where you are.

You know, we say tomah-toes, you say tomay-toes...


quote:
Originally posted by punter:
To be fair,Linda placed the amorphous globs(deposits as she called them)from treated mice into BSK serum culture.She could not culture a spirochete from it.Spirochetes were cultured from untreated mice.

A cultured viable spirochete,would be much better proof of a persister then staining could prove.



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Razzle
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[woohoo] Go Dr. MacDonald -- yay!!! So, so glad he is researching this stuff for us!!!

--------------------
-Razzle
Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs.

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Tincup
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"To be fair,Linda placed the amorphous globs(deposits as she called them)from treated mice into BSK serum culture.She could not culture a spirochete from it.Spirochetes were cultured from untreated mice."

That's no surprise using the BSK medium. Not a good base according to studies that can't seem to find anything using it.

Using the BSK medium is like using an electric skillet to try to find a needle in a haystack.

[Big Grin]

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poppy
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This is not an author that has any credibility anymore with lyme patients. She has shown her true colors, and the chances that she would be willing to do anything that showed the real nature of this infection are nil.

I would put her work into the same category as the silly amber theory that was advanced.

These people are either liars or totally incompetent.

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Eight Legs Bad
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Punter,
Tincup is correct that BSK can prove useless for culturing certain species/strains of Lyme-causing Borrelia. However, it was successful at culturing the particular strain used by Dr Bockenstedt in the sham-treated mice, and so, to someone ignorant of biofilm science, the expectation might be that it should automatically be capable of culturing biofilm Borrelia too.

This is not the case. And while the study you quoted appears to support your point of view, it is in fact very old, as it was published 11 years ago. In such a cutting-edge field as Biofilm biology, 11 years is a very long time.

I apologise for not posting the source of my quote re Viable but not Cultivable bacteria. I've pasted it below. As you can see, my source is from 2011 - bang up to date.

But over and above this, Dr Costerton, who is the acknowledged world expert on Biofilms in general, has said that biofilm microbes are **different** to planktonic forms in many ways, and they do not readily grow on ordinary culture media which grow the non-biofilm forms.

You're very spirited in your defense of the IDSA guidelines author. You write as if you have a scientific background. Care to introduce yourself, sir?

It's the done thing here.
Elena


J Microbiol Methods. 2011 Aug;86(2):266-73. doi: 10.1016/j.mimet.2011.04.018. Epub 2011 May 15.
Viable but non-culturable (VBNC) bacteria: Gene expression in planktonic and biofilm cells.
Trevors JT.
Source

Laboratory of Microbiology, School of Environmental Sciences, Rm. 3320 Bovey Building, University of Guelph, 50 Stone Rd., East, Guelph, Ontario, Canada N1G 2W1. [email protected]
Abstract

Viable but non-culturable (VBNC) bacteria are common in nutrient poor and/or stressed environments as planktonic cells and biofilms. This article discusses approaches to researching VBNC bacteria to obtain knowledge that is lacking on their gene expression while in the VBNC state, and when they enter into and then recover from this state, when provided with the necessary nutrients and environmental conditions to support growth and cell division. Two-dimensional gel electrophoresis of proteins, global gene expression, reverse-transcription polymerase chain reaction (PCR) analysis and sequencing by synthesis coupled with data on cell numbers, viability and species present are central to understanding the VBNC state.

Copyright 2011 Elsevier B.V. All rights reserved.

quote:
Originally posted by punter:
If BSK medium is not a good base why does Dr Sapi use it in her studies:

http://www.ncbi.nlm.nih.gov/pubmed/23110225

http://www.ncbi.nlm.nih.gov/pmc/articles/pmc3480481

As far as VNBC's are concern,they are still in the hypothetical stage according to this study:

http://www.ncbi.nlm.nih.gov/pmc/articles/pmc1084037

In the conclusion it states:

"The only validated operational test of bacterial viability is propagation in culture.For readily culturable spieces of bacteria,it is expected that VBNC cells would be capable of regaining culturabilty...........

While VBNC concepts have stimulated much interesting work,the results have yet to clear the high hurdle of practical success set by the proven accomplishments of established microbiological principles.

I would think this is what Dr Bockenstedt's views are about the amorhous deposits she found.I think to call her a fraud is a bit out of line.



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poppy
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This study dating from 2001 is hardly the latest information on the subject. We have learned a lot about persisters and inactive forms, biofilms since then.

Dead pathogens are removed from the body, they do not hang around indefinitely.

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lax mom
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punter: why are your only 2 posts on this entire board on this thread?

Thing that make you go hmmmm.

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Tincup
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"If BSK medium is not a good base why does Dr Sapi use it in her studies:"

Glad you asked!

UNFORTUNATELY- and shame shame- to be accepted for publication and not torn to shreds for using a better product IF one could be had, studies need to be uniformly performed; hence when the IDiots use something (either good, or as in this case BAD, but patented), others are stuck in that same boat.

Kind of like the Fallon study...

Fallon had tons of patients with Lyme to chose from, but they had to eliminate the majority because they didn't test positive on the IDiots crummy tests. Since the IDiots used the crummy tests and control the market, we are all stuck with using that same garbage as a result.

So basically.... the direct answer is....

Standardized medium facilitates comparison of research results between laboratories, so Dr. Sapi was basically forced to use it and HOPE that it provided comparable results.

Just for fun... Meet Barbour (the "B" in the BSK medium). I don't think he likes us.

Quotes...

"The fact that the N.I.H. plans to spend about $4 million on this study [the long-term use of antibiotics to treat Lyme disease] means less money for more useful projects" Alan Barbour, MD, in The New York Times OP-ED of July 5, 1997

Lyme disease is primarily a disorder of suburban, educated middle- and upper-class people. Lyme disease can be as disabling as syphilis, but there usually is not a stigma to having Borrelia burgdorferi infection. Alan Barbour, MD. Journal of the American Medical Association, January 21, 1998

Currently, there are many sources of information about Lyme disease, much of which is in disagreement with the experts' advice. These sources include the Internet, books on Lyme disease written by laypersons, and pamphlets, newsletters, and call-in help lines of patient advocacy groups." Alan Barbour, MD. Journal of the American Medical Association, January 21, 1998

Oh, and his testimony in front of the NY Committee on Health kind of gives you an idea of his views on chronic Lyme and antibiotic treatment.

https://sites.google.com/site/idsaonlyme/barbour-alan/testimony-ny-assembly

OR, you can read Barbour's book that got one whole star on Amazon. It was published by Johns Hopkins Press, of course.

"Dr. Barbour argues for a restricted definition of Lyme disease, including specific patient symptoms such as the characteristic "bulls-eye" rash, arthritis or facial palsy, or, in their absence, cultivation of bacteria or identification of specific antibodies in the blood."

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Eight Legs Bad
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As Dr. Macdonald has pointed out that federally-funded researchers are obliged by the regulations to share tissue, it should be possible to demand that the agencies which funded Dr. Bockenstedt's study deny her any future funding.

I know many of you will say "The NIH and CDC will never take notice of us". But the Lyme community should still, in my opinion, place this demand, and flag up the fact that she has broken the regulations. After all, the money given to her was public money.

Moreover, the third source of funding was a charity in which Lyme advocates are involved.

We spend enormous time, energy and resources acting defensively - why can't we take the offense for once? Bockenstedt may be a protege of the pro-Steerite establishment - but she's broken their own rules.

Elena Cook

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Justice will be ours.

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poppy
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Well, maybe the answer is to file a complaint with NIH at whatever office it is that takes them. Maybe this one:

http://ombudsman.nih.gov/nihFedResourcesOfficeResearchIntegrity.html

However, I am not sure how honest any office is at NIH. They may not be independent of the politics of this disease.

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lax mom
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quote:
Originally posted by punter:
Dr Bockenstedt has already answered Dr Macdonalds letter:

http://www.lymeneteurope.org/forum/viewtopic.php?f=7&t=4401

Very childish response. Calling another person "crazy", etc ranks among the intelligence level of preschoolers.

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Eight Legs Bad
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Friends and...guest,
We have a duplicate thread going now as member Paulie re-posted my article and a conversation followed. I'm pasting it here and hope we can all stick to one thread as otherwise it gets confusing...thanks,
Elena

------------------------
Copied over from Lymenet Medical thread entitled "Alan Macdonald Kicking IDSA Butt":


lpkayak
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Icon 1 posted 21 December, 2012 05:49 PM Profile for lpkayak Send New Private Message Edit/Delete Post Reply With Quote i cant pretend to understand it right now...i have in the past understood his writings. but i am still happy about it. woo hoo!!!!! dr M...my hero (i do have more than one hero these days...eva is another one-and there are more)

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please excuse my typos. hope to get these hands fixed soon.
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jackie81
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Icon 1 posted 21 December, 2012 06:25 PM Profile for jackie81 Send New Private Message Edit/Delete Post Reply With Quote Could anyone summarize this for me? I cant even begin to comprehend what it says either thanks Posts: 457 | From Out there somewhere | Registered: Jul 2010 | IP: Logged | Report this post to a Moderator
poppy
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Icon 1 posted 21 December, 2012 06:37 PM Profile for poppy Send New Private Message Edit/Delete Post Reply With Quote She says blobs seen are not biofilm, not alive.

He says there is test to confirm whether dead or alive.

She declines to do the test. Posts: 936 | From USA | Registered: Mar 2004 | IP: Logged | Report this post to a Moderator
Hopeny
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Icon 1 posted 21 December, 2012 06:56 PM Profile for Hopeny Send New Private Message Edit/Delete Post Reply With Quote Was his letter published? Posts: 58 | From New Yorl | Registered: Jan 2012 | IP: Logged | Report this post to a Moderator
punter
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Icon 1 posted 21 December, 2012 07:03 PM Profile for punter Send New Private Message Edit/Delete Post Reply With Quote The test he wants done has accuracy problems. Posts: 5 | From usa | Registered: Dec 2012 | IP: Logged | Report this post to a Moderator
lax mom
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Icon 1 posted 21 December, 2012 07:10 PM Profile for lax mom Send New Private Message Edit/Delete Post Reply With Quote I sense a troll. ^

--------------------
Clinical dx: Lyme,Babs
IgG +: B. Henslae, Ehrlichia, Anaplasma
HHV6
Coxsackie B3

HLA DR4+, 4-3-53
MTHFR hetero. A1298C
KPU/HPL, high lead
MOLD and PARASITES
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joysie
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Icon 1 posted 21 December, 2012 07:29 PM Profile for joysie Send New Private Message Edit/Delete Post Reply With Quote "The test he wants done has accuracy problems". Then it should be accepted by the IDSA, just like the rest of their lyme related tests, LOL. Posts: 500 | From Maryland | Registered: Jan 2007 | IP: Logged | Report this post to a Moderator
lax mom
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Icon 1 posted 21 December, 2012 07:35 PM Profile for lax mom Send New Private Message Edit/Delete Post Reply With Quote

quote:Originally posted by joysie:
"The test he wants done has accuracy problems". Then it should be accepted by the IDSA, just like the rest of their lyme related tests, LOL.

[Big Grin]

--------------------
Clinical dx: Lyme,Babs
IgG +: B. Henslae, Ehrlichia, Anaplasma
HHV6
Coxsackie B3

HLA DR4+, 4-3-53
MTHFR hetero. A1298C
KPU/HPL, high lead
MOLD and PARASITES
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paulieinct
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quote:Originally posted by poppy:
She says blobs seen are not biofilm, not alive.

He says there is test to confirm whether dead or alive.

She declines to do the test.

Not only that, she refused to give Macdonald tissue samples.

Her refusal is in violation of Federal regulations.

Macdonald knows his stuff. He knows there were live organisms in that biofilm matrix. Clearly, Bockenstedt refuses to give anyone an opportunity to prove it. That would make her evil in my book. People are dying.

--------------------
15 yrs w/o diagnosis. Numerous arthritic, neuro, cardiac, vision, bowel symptoms. LYME: CDC neg., IGENEX pos., Dx May '08.,now on zith, ceftin, alinia, fluconazole,, LDN +suppl.
Jan.'09 dx w/Babs, Erlichia.
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punter
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Icon 1 posted 21 December, 2012 09:13 PM Profile for punter Send New Private Message Edit/Delete Post Reply With Quote She did not have any tissue left to give.

http://www.lymeneteurope.org/forum/viewtopic.php?7&t=4401 Posts: 5 | From usa | Registered: Dec 2012 | IP: Logged | Report this post to a Moderator
poppy
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Icon 1 posted 21 December, 2012 09:46 PM Profile for poppy Send New Private Message Edit/Delete Post Reply With Quote How convenient, if true. Posts: 936 | From USA | Registered: Mar 2004 | IP: Logged | Report this post to a Moderator
Eight Legs Bad
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Icon 1 posted 22 December, 2012 01:48 PM Profile for Eight Legs Bad Author's Homepage Send New Private Message Edit/Delete Post Reply With Quote Hi all
Thank you for posting my article containing Dr McDonald's letter, but we seem to have a bit of a duplicate thread going... There was already a discussion here at LymeNet Medical which you can find at the following URL:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/121833

I wonder if we could go back to that original thread as it gets confusing when there are too many threads discussing the same thing?

Some of you said you found Dr M's letter difficult to understand. It is a letter written by one scientist to another, so it is understandably difficult for a layperson. I tried to clarify some of the content in lay terms, and some of you here have mentioned the gist of what is going on, but if anyone still has difficulty understanding it, please email me privately ([email protected]) and I'll try my best to clarify.

I'm going back to the original thread now, where I will answer the allegation from our "guest" Mr. Punter.
Elena Cook

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Justice will be ours.

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Eight Legs Bad
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Punter,

You say that Dr. Bockenstedt has replied. I did go to your thread at the Denialist front, phony Lyme forum known as LymeNet Europe, set up by a tiny network of Steerites and probably hired collaborators, but I did not see any letter from Dr. Bockenstedt there at all.

Rather, I saw a typically pathetic and libellous post from "hv808ct", former NIH Lyme Program Officer responsible for mass suffering of Lyme borreliosis victims internationally both during, and since, his tenure in that post.

Incidentally, I would advise anyone contemplating going to the URL left by Punter to go there from a public computer only, not a home computer. LNE is certainly a Denialist front, not a real Lyme forum. This is not to say there are not some very good people contributing to that forum - there are. Dr. Macdonald himself has written there. But the forum is completely controlled by the small group of Denialists clustered around the sad personage of Dr Edward McSweegan. Its technical side is handled by Martijn van Duijn, who worked and perhaps still works in the IT dept of a massive Insurance corporation.

Van Duijn allows his friends to break the forum's own rules and allows Mcsweegan et al to publicly abuse Dr Macdonald and others in the most vicious way. However when Dr M asked an innocent question re McSweegan he was threatened with eviction from the forum.

Now Punter, you say that Dr Bockenstedt had no tissue left to spare, and that's why she could not comply with Dr Macdonald'd request. How do you know this? Did she send you a copy of her letter? If so, where is it, and why would she send it to you?

I did ask you to introduce yourself. This is a forum for people who need to receive or are able to give support to those who are suffering, or have loved ones suffering, with chronic Lyme disease. Why are you so reluctant to share any information about yourself?

I note that the last person to join the thread on LNE is actually the same person who started it, ie McSweegan, only this time using yet another name "nnecker".

A quick search of the database here will reveal that "nnecker" joined our group many months ago pretending to be a Lyme patient. Then, when the pioneering paper by Sapi et al was published in October, he suddenly appeared to denounce the idea that borrelia may form biofilms in humans , thereby causing chronic infection.

He was kicked off this forum by the moderators and landed back in his true home -LNE.

Elena

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Justice will be ours.

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Catgirl
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Lax is right (troll). Sorry, but IDSA clones can't convince this group they're right about anything. They've lost all credibility with us. We're on another plane altogether (ILADS). All the best in catching up to reality.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Catgirl
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Read this: bye.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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lax mom
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troll:

I hope WHEN the day comes (when, not if) that your family member gets Lyme disease complex(ie. MSIDS), you better pray that that 14 days of Doxy does the trick. Karma's a ***** and what goes around comes around.

I'm sure you would quickly change your tune about those "dead" amorphous globs when they are inside your child's tissues and blood.

Catgirl is right: bye.

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sparkle7
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Thanks for posting this, 8 legs... I just don't know if this will get us anywhere. I'm very glad for the research of Drs. Sapi & MacDonald to make us aware of what is really going on.

I just doubt that this will change any official policy in regards to treatment, disability, insurance, testing, etc. I think that the people in charge have already factored all this info into their algorithm.

We have to make any adjustments in our treatments on our own. Some doctors may be helpful but many just don't know how to treat people with this illness.

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paulieinct
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Thank you, Elena, for combining the two threads. Thank you also for informing the group about Dr. Macdonald's efforts in this regard.

I remember two years ago we were all told Alan Macdonald was seriously ill, and now he is back fighting the good fight. A true hero.

I figured out what LymenetEurope was all about a while back and quickly got the hell outta there. Disciples of the Dr. Mengele School of Medicine, mostly. You know, where they like to tell patients to "turn right...over there...to the showers!"

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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paulieinct
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quote:
Originally posted by poppy:
This study dating from 2001 is hardly the latest information on the subject. We have learned a lot about persisters and inactive forms, biofilms since then.

Dead pathogens are removed from the body, they do not hang around indefinitely.

I believe this is true for the planktonic forms of borrelia. However, from what I understand from Alan Macdonald's work, the biofilm has a lot of "gunk" in it. Some of the gunk is dead organisms of all kinds. It becomes part of the matrix that protects the live organisms from being killed off by antibiotics or immune system.

--------------------
Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that.

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Eight Legs Bad
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I see our not-entirely-unexpected-but-entirely-unwanted guest "punter" has left, taking all his pro-Denialist messages with him.

Did he jump, or was he pushed? [Smile]

Just to show I am being fair to "Linda" , as he calls her (Bockenstedt), I will reply to a few of the lame points he directed us to in the LNE post.

1. If the Invitrogen Dead/live assay is not reliable, why is it used by thousands of scientists the world over? A simple Google scholar search brings up more than 1700 references.

Here is a citation from a Lyme-related paper attesting to the reliability of the assay:

J Bacteriol. 2000 May; 182(10): 29092918.
PMCID: PMC102002
Altered Stationary-Phase Response in a Borrelia burgdorferi rpoS Mutant
Abdallah F. Elias,1,* James L. Bono,1 James A. Carroll,2 Philip Stewart,1 Kit Tilly,1 and Patricia Rosa1
Laboratory of Human Bacterial Pathogenesis1 and Microscopy Branch,2 Rocky Mountain Laboratories, National Institute of Allergy and Infectious Diseases, National Institutes of Health, Hamilton, Montana Hamilton, MT 59840


"To determine the ability of the LIVE/DEAD BacLight bacterial viability kit to accurately reflect cell viability, we compared data from this assay with the results of a growth endpoint determination obtained with a microdilution assay (Fig. ​(Fig.7).7).

In the microdilution assay, the growth endpoint of B31-A log-phase bacteria was determined at a dilution corresponding to 1.3 spirochetes (Fig. ​(Fig.7B).7B). After 40 min of exposure to 1 N NaCl, the growth endpoint occurred at a dilution corresponding to 87 spirochetes in the untreated control culture (Fig. ​(Fig.7B).7B).

Thus, exposure of a log-phase culture to 1 N NaCl for 40 min resulted in greater than 90% reduction in the number of viable organisms, as assessed by limiting dilution. This value is comparable to the results obtained with the LIVE/DEAD BacLight bacterial viability kit (Fig. ​(Fig.66 and ​and8).8).

These results also demonstrate a good correlation between the LIVE/DEAD BacLight bacterial viability kit and the growth endpoint determination by limiting dilution with respect to absolute numbers of viable bacteria. "

The team that did this include leading geneticists who were involved in the sequencing of the genome of Bb.

Re the idea that Dr Bockenstedt could not provide any tissue for Dr Macdonald as she had "used it all up" - I am reliably informed that this is extremely unlikely. It is just not the way lab scientists work.

Re the reference to mRNA - under NIH rules Dr B should have provided this data. She did not. Why not? Dog ate it?

Sparkle, I can understand why you want to concentrate on finding treatments that might help, but I don't see this aim and the idea of exposing the Denialists as mutually exclusive. We can continue to search for solutions that will help us/our loved ones, whilst still putting up a fight.

It is fully possible there are excellent diagnostic techniques or even cures known to the Steerites, but which they will not release because they are military secret. It is time to put a stop to all this. If Agent Orange had not been exposed we would probably still be dousing civilians and our own soldiers with it all round the world.

To those of you who find the idea that the Denial is not just a matter of Insurance company and patent-holders manipulating organisations like the IDSA, but is an actual government-level cover-up due to the status of Borrelia spp as a bioweapon, please see my website www.elenacook.org where I have assembled much factual information regarding this.

Not wild conspiracy theories, not giant lizards secretly controlling the planet - just hard facts, all backed up by solid references - much of it from the Denialists themselves.

Merry Christmas to all on LymeNet...except any more Steerite infiltrators who may still be lurking here, waiting to be ejected...

And let's look forward to a New Year of fighting to expose the fraudulent science, the crime against patients and the persecution of our good doctors - an end to the whole unforgivable cover-up!

Elena

--------------------
Justice will be ours.

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lax mom
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The truth is on our side.

My favorite quote from UOS is when Dr J says there will come a day when the question becomes "What did you know? and when did you know it?"

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sixgoofykids
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quote:
Originally posted by Eight Legs Bad:
I see our not-entirely-unexpected-but-entirely-unwanted guest "punter" has left, taking all his pro-Denialist messages with him.

Did he jump, or was he pushed? [Smile]

He was a troll, so he was pushed [Wink]

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sixgoofykids.blogspot.com

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Eight Legs Bad
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Thank you for keeping this environment clean!
Elena

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Justice will be ours.

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sixgoofykids
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quote:
Originally posted by Eight Legs Bad:
Thank you for keeping this environment clean!
Elena

[Smile]

--------------------
sixgoofykids.blogspot.com

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Eight Legs Bad
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Another piece of false information in Bockenstedt's paper, not mentioned earlier is the following. She claims that her team's video footage of a spiral Bb converting into a round form could not possibly signify cyst formation, but must have just been a spirochete becoming phagocytosed (ie ingested by a white blood cell).

Her justification for this is that, she claims, bacterial cyst formation normally takes hours to days.

In fact Lyme borrelia have been filmed converting to cysts, and back again, in ***seconds***.

Elena

--------------------
Justice will be ours.

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sparkle7
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re: Sparkle, I can understand why you want to concentrate on finding treatments that might help, but I don't see this aim and the idea of exposing the Denialists as mutually exclusive. We can continue to search for solutions that will help us/our loved ones, whilst still putting up a fight.

-

I agree, Elena... It's not easy to fight these things, though.

---

re: If Agent Orange had not been exposed we would probably still be dousing civilians and our own soldiers with it all round the world.

-

It is still around...

18 September 2012

http://www.bbc.co.uk/news/science-environment-19585341

excerpt-

A US biotechnology company is set to introduce a controversial new genetically modified corn to help farmers fight resistant weeds.

Dow Agrosciences says its new GM product is based on a chemical that was once a component of the Vietnam war defoliant, Agent Orange.

It is needed they say because so called "superweeds" are now affecting up to 15 million acres of American crops.

Dow argues the new approach is safe and sustainable.

---

Have you read any of PJ Langhoff's books? They are pretty amazing research documents. I got to reading about 100 pages of God Science & had to put it down.

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Andromeda13
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It's not easy to keep on fighting, thank heavens for this forum and the way that the troll was evicted!
Sometimes though it does keep us on our toes, and when the trolls leap out from under their bridge onto a forum, it makes us wonder why? There must have been something to upset them. So it gives us an idea of what they are worried about - and when they might decide to design another rushed experiment with a small number of mice to try and disprove something.

They are really worried about those biofilms, as well as the cysts [Smile]

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