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» LymeNet Flash » Questions and Discussion » Medical Questions » C6 Elisa - misinformation

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Author Topic: C6 Elisa - misinformation
Eight Legs Bad
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There is a great deal of inaccurate information being circulated currently re the C6 Elisa and its supposed benefits for us.

The C6 Elisa, like all the Elisas, is useless as a screen and particularly useless at detecting "late" or chronic Lyme. That is why ILADS never recommends it.

Dr Burrascano has described it as "just as bad as the standard Elisa":

http://www.ilads.org/media/boston/slides/burrascano-sh/burrascano-sh.html

Here in UK we stand at the bottom of the league tables for detection of Lyme in Europe. Our official incidence rate is 1.73 per 100,000.

Hollland, with identical ticks,flora and fauna, has had official stats of over a HUNDRED per 100,000, as compared with our "1.73". and Holland's figure is is itself a huge under-estimate, based as it is ONLY on EM rashes.

What do we use in UK? Dr Tim Brooks, our Denialist-in-chief, uses the highly-flawed IDSA's recommended 2-tier serodiagnostic method.

What is our first tier?

The C6 Elisa.

It is incomprehensible to me that a doctor who most people thought on our side, and who presides over a prestigious Lyme institute in columbia university, funded by LDA, could proclaim that the C6 Elisa is a good screening test.

The use of Elisas as a screen is responsible for the huge rate of missed cases of Lyme which later turn chronic. The C6 is no different in this regard.

I challenge anyone to show me a peer-reviewed article not written by top Denialists outlining a scientifically sound basis for claiming that C6 Elisa is a good screening test.

Elena

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Justice will be ours.

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duncan
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Well, Elena, you have pretty much identified some purported key weaknesses of the C6, i.e., it is supposed to be constrained to acute cases.

It is a puzzle to me that in the UK they embrace it as a first-tier screen for ALL possible Lyme cases. Anyone with late stage could be left outside of the test's promoted strength.

Incidentally, there is a push in the US to replace the conventional ELISA with the C6 as part of the 2T as well.

BTW, I disagree with you about using it for late stage. I think if you've a strain that carries that protein, it will pick up both late and acute stages.

I believe one of the problems denialists are having is explaining away elevated C6 values post-treatment. That is, if you happen to be infected with a strain that carries the C6, and if your immune system generates an appropriate response - both BIG ifs - the test actually may be demonstrating continued infection after treatment. But that is just my personal opinion.

Again, I cannot remember what the weaknesses of the C6 are - I certainly recall there are weaknesses. But the logic of tapping the invariable domain (IR6) of the variable surface antigen VlsE - so mitigating shifting protein concern - seems good --- but only for the right strains and for people whose immune systems aren't compromised or hoodwinked..

New tests are needed. Period.

(Breaking up a paragraph for easier reading here for many)

[ 08-27-2015, 04:44 PM: Message edited by: Robin123 ]

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Eight Legs Bad
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Duncan , you said:

"It is a puzzle to me that in the UK they embrace it as a first-tier screen for ALL possible Lyme cases. Anyone with late stage could be left outside of the test's promoted strength."

No puzzle. Our PHE is just like your CDC - they have been trying their best to cover up the true magnitude and seriousness of the Lyme epidemic for years. And the C6 has proved its ability to MISS Lyme very very well here in the UK, where we have an appalling detection rate.

"Incidentally, there is a push in the US to replace the conventional ELISA with the C6 as part of the 2T as well. "

Well, originally they were pushing for that, but now they are wanting to have the C6 elisa as a standalone test across the United States.

Leading the charge for the C6 Elisa is Steere, who holds a patent on the C6, although I dont think that's his main motivation - his main motivation is to eradicate western blot use, because too many Lyme-literate people are using blots outside of CDC criteria recommendations and discovering that the Elisa produces showers of FALSE NEGATIVES. It's embarrassing for them.


Duncan wrote:
"BTW, I disagree with you about using it for late stage. I think if you've a strain that carries that protein, it will pick up both late and acute stages."

First, I should say that even the data claiming it's sensitive in the acute stage are very very variable. And the studies that claim it has high sensitivity for the "EM stage" (no one with EM needs a blood test anyway, as EM is pathognomonic for Lyme),

- even these tend to be based on the same old Denialist trick data - where they take a collection of samples that were found to be positive using their original two-tier methods, and then see how many of THOSE the C6 detects.


What about all the false negatives that were missed by the 2-tier system? How many of THEM would the C6 have detected? Likely very few - as evidenced by the UK's appalling rate.

We are a country of over 64 MILLION people, with Lyme ticks and tick terrain galore - yet our incidence barely rises over 1000 a year.

You can thank our public health system's adherence to IDSA and CDC guidelines for that, and most recently you can thank Dr Tim Brooks and the C6 Elisa (as well as insensitive western blot) for that.

Brooks, who has been invited by LDA/Columbia to lecture on "Lyme in England" to US doctors in November, and as of a few days ago, has also been invited by Lyme Disease Action in England, a group which has gone so far over to placating the Denialists that they now hold joint meetings with them, distribute their leaflets, and deny the reality of mother-to-child transmission, proven over 30 years ago.

There has been a petition ongoing against the invitation of Brooks to the USA which is here:

https://www.change.org/p/lyme-disease-association-retract-your-invitation-to-britain-s-leading-lyme-denialist-tim-brooks-to-address-physicians-at-the-nov-2015-lda-columbia-conferen ce

Duncan, you wrote:

"I believe one of the problems denialists are having is explaining away elevated C6 values post-treatment. That is, if you happen to be infected with a strain that carries the C6, and if your immune system generates an appropriate response - both BIG ifs - the test actually may be demonstrating continued infection after treatment. But that is just my personal opinion."

The one strength - the only strength - the C6 has is that it is extremely SPECIFIC. So if you have a positive C6 you can be damn sure that's a true positive.

But the actual performance of the C6 in DETECTING Lyme is just as dismal as the original two-tier Elisa-plus-blot. Even Steere et al say so, only rather than say it's "just as dismal", they phrase it differently. they say it's just as good.

You said; " But the logic of tapping the invariable domain (IR6) of the variable surface antigen VlsE - so mitigating shifting protein concern - seems good --- but only for the right strains and for people whose immune systems aren't compromised or hoodwinked.."

But Duncan, in Lyme, everyone's immune system is "hoodwinked". There are 101 different ways this infection evades the immune system. You don't need to start off immunocompromised. Hence the constant story we here of people in the peak of health, athletes, or people holding down extremely demanding jobs and then jogging for miles in their leisure time - suddenly find they cant even lift their head from the pillow.

As for the "right strain" -there are myriad strains, and these are just the ones we know about. And let's not forget miyamotoi, which is not even part of the Bbsl species group - yet causes a disease identical to Lyme.

I would just like to repeat my challenge for any new readers of this thread:

I challenge anyone to show me a peer-reviewed article not written by top Denialists outlining a scientifically sound basis for claiming that C6 Elisa is a good screening test.

Elena

...............................................

(Breaking up a paragraph for easier reading by many here)

[ 08-27-2015, 04:46 PM: Message edited by: Robin123 ]

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duncan
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How did you have the energy to write all of that? Very cool. [Smile]

Thank you for your detailed response.

I don't think Steere is a patent holder in the C6, but I could be wrong.

I have all the C6 studies, too, and you're right about who authors and advocates them.

I know a bunch of us put our heads together a couple of years ago and figured out what the weaknesses of the C6 were relative to sensitivity, but I can't remember the specifics.

But I can tell you some C6 advocates appear to be distancing themselves from the accuracy outside of acute case, in large part because they cannot explain away the persistent positives. I am trying to get answers about this but meeting a stone wall.

Yes, I know there are 300 strains, over 100 in the US alone. The logic of the C6 is that protein was in most. I think the only one that I ever saw actually identified it wasnt was N40, but I am sure you are right.

Sorry, I have been so busy coming at this from the opposite side for so long - trying to get to the bottom of persistent C6 values emergent in late stage or post-treatment patients...It's hard to look at it from the most troublesome angle, which potentially impacts more people by far.

ETA: In THEORY, the C6, if it recognizes the infection, will register positive, i.e., its value will climb above 1.10. Upon treatment, that value should demonstrably decline, either back to below positive threshold, or by a fourfold factor. One or the other.

So, if that is accurate, how do they explain when values don't decline? As far as I can tell, they cannot explain this. To me, this is pretty much the same as saying the C6 proves Lyme persists after treatment; that is a big deal, to say the least. But I can find little written about it, or peeps willing to discuss.

................................................

(Breaking this up for easier reading for many here)

[ 08-27-2015, 04:47 PM: Message edited by: Robin123 ]

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Robin123
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Interesting discussion. Please remember to break up your posts into 1-3 lines max for those with reading challenges due to neurolyme.

My question: would there also be a money trail connected with the C6 peptide test, as in who benefits economically from the test?

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duncan
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Well, I'm fairly certain Immunetics is the primary corporate beneficiary, but you need see who owns the patents.

Also, not sure of NIH role in this. Like what role does the 1980 Bayh-Dole Act assume.

Again, the patent holders and their backgrounds are key. If they are/were part of an academic institution, then monies may be funneled that way, too, I believe.

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Eight Legs Bad
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Here is a C6 patent with Steere as one of the inventors:

Publication number WO2014028726 A1
Publication type Application
Application number PCT/US2013/055123
Publication date Feb 20, 2014
Filing date Aug 15, 2013
Priority date Aug 16, 2012
Also published as US20150219646
Inventors John A. BRANDA, Mary Jane FERRARO, Allen C. STEERE
Applicant The General Hospital Corporation
Export Citation BiBTeX, EndNote, RefMan

John Branda is also a name you will see on most of the papers making baseless claims about the C6's sensitivity.

Re the weaknesses of the C6, in a nutshell - all the same weaknesses of Elisa's in general. Also be aware that the C6 Elisa currently being pushed, the Immunetics C6 as you said, is based on Bbss B31. B31 is an artificial lab-created strain , created by arch-Denialist Alan Barbour of the Epidemic Intelligence Service.

B31 has NEVER been proven to be capable of infecting a human, and we have no idea if it can !(perhaps Barbour would like to volunteer himself as a guinea pig?)

As Dr MacDonald famously pointed out in one of his videos, the B31 strain (which Barbour gave the world as the protoype for all subsequent testing)was made by limiting dilution cloning.

In lay terms, this means that Barbour took what he found in the Shelter Island batch of ticks, and diluted it over and over and over and over till he was literally left with just ONE bacterial cell.

He then cultured this ONE cell, creating a clone in which all the Borrelia had one, identical set of proteins.

This gave Barbour and the EIS enormous control over what anyone could do subsequently to search for Lyme in ticks or animals - or in patients.

We have no idea how relevant those proteins in B31 may be to the real Borrelia strains that are infecting humans out there!

Now Duncan, when you say you think that the same C6 protein is in nearly all strains, that's not correct.

First of all, the C6 is a peptide (ie a fragment of a protein), not a protein. That's not the main issue though.

The main issue is that when it comes to antibodies, even a tiny tiny difference between peptides could mean that your antibody won't bind to the peptide in the Elisa.

Antibody binding is generally very specific, like a lock and key.

So for example, one single nucleotide difference between the DNA sequence coding for the C6 peptide of the strain you are infected with, and the DNA sequence of the c6 peptide in Bb sensu stricto B31 (which no one has ever been known to be infected with) could result in a tiny difference in the amino acid make-up of your peptide.

The result: the C6 "key" does not fit your antibody "lock", and you get a negative C6 Elisa.

Even the papers hyping the C6 elisa have admitted that some strains have been sequenced and found to have 4 amino acids different. Just ONE amino acid different could in theory make you negative.

We have no idea how many strains are out there, and the number of strains of borrelia that have been fully genetically sequenced is minuscule.

Worse, no one is looking at the many pathogenic Bb sl species that don't happen to be burgorferi sensu stricto, garinii or afzelli.

Even worse, no one is acknowledging the fact that for all we know, more people could actually have Miyamotoi "relapsing fever" Borrelia, than any of the Bb group!

Dr MacDonald has just photographed 100 consecutive films of Borrelia miyamotoi inside Alzheimer plaques in autopsy brain tissue(!)

So in short, the Denialists ignore the overwhelming majority of strains out there, pretend that the fact that there may be gazillions more that we don't know of is irrelevant, and then proclaim that everyone should react to the B31 C6 peptide.

Robin, you asked about the money trail. Well, Immunetics and Gary Wormser have been funded by NIH to carry out the flawed studies.

Duncan, the evidence even in acute Lyme is not consistent at all. A recent Dutch study of early Lyme found the C6 missed 12 out of 14 cases.

As for proving persistence of the microbe, a positive C6 can't really. It can suggest continuing infection, but it can't prove it. Only tests based on testing for antigen, as opposed to antibody, can definitively prove persistence.

The Denialists of course will haul out unproven auto-immune theories and equally unproven "debris-activated -immunity -in-absence-of-live-bugs" theories ad nauseam.

A little glossary of jargon:

amino acid - the building blocks from which proteins are made

antigen - a substance that causes a reaction from your immune system

nucelotide - the building blocks from which DNA is made

ad nauseam - until you throw up


Elena

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Justice will be ours.

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duncan
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John Branda may be one of the new Guideline's authors, if I remember correctly.

The Steere/Branda/Ferraro C6 patent may be a variation on the usual offering. This does not mean that Steere was one of the original inventors.(Although he may be).

The C6 has been around since early 2000's, right? I have a C6 study dating back to 1999. This patent was filed in 2012.

Regardless, it would seem he has a horse in this race as well; you appear to have been right about Steere having a patent. Well done.

I appreciate the history of B31. I'm not sure that undoes the C6 logic. Whether the peptide is shared across most strains becomes an issue. And you may be right when you say a little difference in amino acids could throw off the test; I don't know.

These sorts of weaknesses should be out there in NIH-sponsored formal studies, but we know what's wrong with that picture.

Yes, agreed, no antibody tests proves infection. But it seems to suggest continued infection, and we cannot yet confidently proclaim a reliable and validated culture test outside of EMs.

So until we have one of the latter, we need to work with what we have. You have the same limitations with Syphilis.

I'm not sure how important it is about the C6 kit being derived from B31. It could just as easily be the G39/40 C6, or the 297 C6, correct?

Look: So the C6 is flawed. It misses cases. I am happy to grant that. I have no problem with that. If you test positive,however, you are testing positive for...what? What strain are you testing positive for if you reel in a positive?

It's against a B31 kit, but odds are it's not B31 strain, correct? So what does the positive mean?

As far as I am concerned, it means you are infected with a strain unknown of Bb. Regardless of whether the strain is identified, it's Borrelia. It's Lyme. You are infected with a strain of Lyme. And you can map that infection arc as it retreats in many cases. IN WHATEVER STRAIN YOU'RE INFECTED WITH.

When your titers remain high, they are high for your strain, and they indicate a continued infection that cannot be explained.

This is important. Yes, the C6 has limitations. But if it has a utility, and if that utility supports the notion that Bb persists despite conventional treatment recommendations...

Well, this is my focus.

That is immaterial to your other points about pathogenic species and miyamotoi. I agree.

[ 08-29-2015, 05:05 PM: Message edited by: duncan ]

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Robin123
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Thanks for explanations - I guess that's why the IGeneX lab uses two strains, the B31 and the 297. They say they can catch most borrelial strains.

Elena, I had to laugh at your inclusion of ad nauseum in the biology list!

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TNT
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Elena, I tried to send you a PM, but your mailbox is full.
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Eight Legs Bad
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Duncan, you wrote:

"...Whether the peptide is shared across most strains becomes an issue. And you may be right when you say a little difference in amino acids could throw off the test; I don't know. "


Not "may be right", but "am right".

Duncan here is a quote from the late Prof Janeway, one of the foremost experts in immunology:

"For example, in the complex of hen egg-white lysozyme with the antibody D1.3 (Fig. 3.10), strong hydrogen bonds are formed between the antibody and a particular glutamine in the lysozyme molecule that protrudes between the VH and VL domains. Lysozymes from partridge and turkey have another amino acid in place of the glutamine and do not bind to the antibody."

source: "Immunobiology: The Immune System in Health and Disease. Janeway 2001

Duncan, I can see you have a scientific background (by the way, what's your field?), but let's try and keep it as plain as possible so that everyone can understand the issues.

In simple terms:

Amino acids are the building blocks of proteins.

The C6 peptide is a short piece of protein composed of a few amino acids.

In Prof Janeway's example an antigen from hen egg white contained just ONE amino acid different to its equivalent antigen in other birds - and that was enough to cause the antibody not to bind to the others as a result.

Will try and sort out mailbox and answer more fully later - no time now - apologies.

Elena

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duncan
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My science background extends no further than Lyme patient.

Coincidentally, that is my field these days as well. [Smile]

I envy your certitude - mine keeps getting undone. But I am getting use to my mental missteps.

Sorry, I am not familiar with Prof Janeway.

I trust she was expert in her field, though.

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Eight Legs Bad
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Wow - you're doing very well for "just a patient", Duncan. Why, for a moment there I thought you might be .well... a microbiologist!


Duncan said:

"These sorts of weaknesses should be out there in NIH-sponsored formal studies, but we know what's wrong with that picture."

Well the biowarfare scientists McSweegan and Baker long ago had that one sewn up.

Any researcher who wants better tests and treatment need not apply.

Duncan wrote:

"... But it [ie the c6] seems to suggest continued infection, and we cannot yet confidently proclaim a reliable and validated culture test outside of EMs."


A rising titre of C6 (or ANY specific antibody) in a symptomatic patient would definitely suggest continued infection.

But you're wrong about having no reliable culture method.

The method developed by Drs Sapi and MacDonald is excellent - it's been subject to a false discrediting by CDC, that's all.

Lyme patients everywhere should be defending the validity of that test, as it's one of the few tests that can DEFINITIVELY prove chronic infection. (Culture is the gold standard.)


"I'm not sure how important it is about the C6 kit being derived from B31."

It's important because B31 is the one strain that NO ONE has ever been found to have. And may therefore differ dramatically in its genetic make-up from the strains that are making people very sick.

Duncan wrote:

"As far as I am concerned, it means you are infected with a strain unknown of Bb."

Absolutely.

" Regardless of whether the strain is identified, it's Borrelia. It's Lyme. You are infected with a strain of Lyme."

That's not in dispute.

" And you can map that infection arc as it retreats in many cases."

No. Well, yes, technically you can "map" whether someone's titres are rising or falling. But what you can then do with that info - that is another question.

You CANNOT conclude from a falling titre that the infection is cured (which is exactly what Steere et al hope to do, on a false basis.)

Amd exactly what Brooks does all the time here in the UK, so that beleive it or not, oru already- appalling detection rate has actually FALLEN slightly since he took over with the C6 as our only first-tier.

We have gone from peanuts to - smaller peanuts.

"Yes, the C6 has limitations. But if it has a utility, and if that utility supports the notion that Bb persists despite conventional treatment recommendations.."

Disagree. Because of the umpteen tricks Lyme uses to evade the immune system, C6 antibodies (just like other specific antibodies) can wane because the bug is no longer visible (or barely visible) to the immune system.

Meanwhile it could be in a sanctuary site like your brain, creating merry hell with your neurons and glia.

There's a reason Steere, Tim Brooks, Wormser etc are all over the C6 Elisa.

And you can be damn sure it's not because they want to help patients.

Elena

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Justice will be ours.

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duncan
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I have a sister who has been a nurse for about 40 years. She will be amused at your comparing me to a microbiologist. But thank you.

I know the ALS test. I said reliable and validated outside of EM's. That test has yet to be validated. And I know why and how the CDC slammed it, so we needn't go there.

Your point about the B31 never being found in anyone is not necessarily relevant to mine, i.e., that the C6 is supposed to be found on many if not most strains.

I understand that declining titers do not equate to a cure. But they should be reflective of a declining antibody response to whatever strain one is infected with - and that is frequently associated with an infection in retreat.

Moreover, when those titers don't decrease after treatment, or when they rise - this is where you will find a paucity of explanation from proponents.

I'm not really sure we are disagreeing here. The C6 misses cases. When it comes up positive, you've got a Bb strain. Yes?

If you are asking me if I think the C6 is a good screen, I would answer that I don't think there should be a screen. I would recommend going straight to a WB, but with reduced band requirements, that would also recognize IgM positives post 60 days.

Even then you would miss too many cases, so new and better tests are needed.

However, I don't get to decide policy. [Smile]

But that is a different topic.

[ 09-02-2015, 09:31 AM: Message edited by: duncan ]

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Eight Legs Bad
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Duncan wrote:

"I know the ALS test. I said reliable and validated outside of EM's. That test has yet to be validated. And I know why and how the CDC slammed it, so we needn't go there."

Yes, we need to.

Not necessarily in this thread. But in general, we NEED to defend good tests when they are developed, not just allow CDC and their allies to trash good tests with unfounded allegations and bad science. Otherwise, no progress can ever be made.

We must not fall into the trap of thinking "Oh well, we are never going to get rid of the Elisa, so the best we can do is search for the "least worst" Elisa, and champion that one as a screen.

That's falling for the Stratfor Strategy, which I've written about in this thread here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/3/35305

Duncan wrote:

"Your point about the B31 never being found in anyone is not necessarily relevant to mine, i.e., that the C6 is supposed to be found on many if not most strains."

The C6 may well be found in many strains of Bb. But one of the main problems is, as I tried to demonstrate earlier, that it may not be genetically identical to the strains people have in their bodies.

And, as I showed, just one discrepant amino acid can mean the difference between a positive and negative Elisa.

And with the Elisa as a screen, that can mean the difference between having a chance at ANY treatment, as opposed to having the door slammed in your face for the rest of your life.

The C6 champions (which equates to most of the Steere camp at the moment, plus, inexplicably, one "LLMD" who I am not allowed to name here), have themselves admitted to discrepancies of as much as 4 amino acids.

Given that the average epitope is only few amino acids long, four is a pretty big discrepancy, don't you think?

Quite apart from that is the **general** issues about ALL Elisas (and in fact all antibody tests). They should never be used as screens for a disease famous for going into immune-evading stealth mode.

Duncan wrote:

"I understand that declining titers do not equate to a cure. But they should be reflective of a declining antibody response to whatever strain one is infected with - and that is frequently associated with an infection in retreat."

In an ordinary infection, yes. In Lyme, no. As stated earlier, a decline in antibody response could mean nothing more than that the infection has travelled to sanctuary sites where it's no longer visible to the immune system.

There are also many many other tactics Borrelia deploys to make itself invisible, such as cloaking itself in host proteins, assuming cell-wall-deficient and other forms in which its immune-alerting proteins are hidden, defeating Toll-like receptors, evading dendritic cells, resisting complement etc etc.

"Moreover, when those titers don't decrease after treatment, or when they rise - this is where you will find a paucity of explanation from proponents."

Well no, they are very good at inventing all kinds of fictional explanations.

Look how IDSA guidelines author Linda Bockenstedt invented the supposed ability of dead bacteria remnants to survive forever in the human body, inciting a ghost-driven immune response according to her - even though that flies in the face of everything that's known and accepted about the immune system and bacteria.

Just imagine, if all the microbes our immune systems killed just hung around, dead, still inciting an immune response.

We would all die in infancy from the immune response to our first common cold.

What really happens is that the body has its own scavenger system, like macrophages to clean up the rubbish.

"If you are asking me if I think the C6 is a good screen, I would answer that I don't think there should be a screen. "

Good, Duncan!

"I would recommend going straight to a WB, but with reduced band requirements, that would also recognize IgM positives post 60 days."

Bad, Duncan!

No offense, but your sister would really have a good chuckle at you here, Duncan.

Because IgM always represents RECENT OR ONGOING INFECTION.

No matter [i]when[/] it happens after the tick bite.

Even in late, late, late Lyme, long past the 60 days (or 30 days even, as these clowns sometimes claim).

Did you know, long long ago Steere admitted it himself, way back in 1986 :

"J Clin Invest. 1986 Oct; 78(4): 934–939.
doi: 10.1172/JCI112683
PMCID: PMC423723

Antigens of Borrelia burgdorferi recognized during Lyme disease. Appearance of a new immunoglobulin M response and expansion of the immunoglobulin G response late in the illness."

(Steere et al)

Of course that was a long time ago, before Steere and the other EIS officers at CDC realised that the epidemic was spiralling so far out of control

At that point the only way to continue the charade, pretending it was a trivial, easily-cured disease, was by creating a national (and even international) testing policy that was guaranteed to miss most cases, especially chronic ones.

You see, Duncan, when you say to me that there would be a problem because :

"with reduced band requirements, that would also recognize IgM positives post 60 days",

... that gets me REALLY worried.

You see, that is exactly the kind of BS they are using right now to push the C6. You mustn't drink that poison Kool-Aid, Duncan.

We can forgive Duncan, for falling for this con, as he's not a microbiologist or a doctor.

But what can we say about trained medical professionals who go along with it?

Elena

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duncan
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Thank you for understanding my deficits. [Smile]

But let's clear up the IgM thing: I am supporting recognizing IgM readings past 60 days, past 60 months...This is because of the relapsing nature of Bb, and the shifting antigen thing...

...And the 2T does not allow for sustained IgM positives...

...But I think it should.

So, I'm confused why I am a bad Duncan. Now, I've a raging case of neuro-lyme, so no surprise on my part. (Although referring to myself in the 3rd person is disconcerting)

Was the wording of my sentence ambiguous? The one that ended "...that would also recognize IgM positives post 60 days."?

BTW, my sister usually gets a good chuckle out of me. I think it is in good measure the reason we speak weekly.

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duncan
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I am curious about the B31 strain discussion, though.

First, who gets tested for their strain? I have tested positive against at least four strains, but I am told that doesn't mean I have them. Testing for strains in humans, unlike ticks, isn't done very often.

Second, the B31 strain is found in ticks, is it not? Or something 99.999% analogous to it? And it is one of the 16 or so strains in the US demonstrated to be pathogenic?

Is going after the B31 clone chasing windmills? I ask this question not to be contentious. My point is - again - not that we aren't missing positives (we are), but rather registering positives needs to remain meaningful...

...That, in the short-term, the strain per se may not be as significant - although I believe strain matters - as developing tests that compensate for the shifting antigen properties and other immune-evasion techniques employed by Bb.

We need to remedy the deplorable situation with too many Bb-infected patients testing negative due to flawed tests.

At the same time, we also need to make sure those who test positive under the current restrictive parameters keep the import of those results.

If anything, we need to expand that umbrella by reducing thresholds - two IgG Bb-specific bands? One? - in existing metrics.

This is important. Very.

I think that the new Guidelines may further dilute the strength of even those who test positive with present mechanisms, undermining the ability to secure accurate diagnoses, and then treatment(however adequate or inadequate).

I fear that not only are thousands not being diagnosed, we are on the verge of it becoming even more difficult to achieve an actionable diagnosis.

This by no means diminishes the calamity that the current testing protocols in both the UK and US engender.

[ 09-02-2015, 01:24 PM: Message edited by: duncan ]

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Eight Legs Bad
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Hi Duncan

I'm sorry I misunderstood your sentence re the IgM - I am glad to hear that you do understand that an IgM response in chronic Lyme indicates active and continuing infection.

You wrote:

"First, who gets tested for their strain?"

No one. That's not my point. My point is the myriad strains (and it's very likely we only KNOW a fraction of them), and the genetic variability between strains, means that we can't be relying on one strain of Borrelia burgdorferi sensu stricto to define antigens that are used to determine whether a person gets helped, or gets told to go to hell.

We already know that serology based on Bb sensu stricto b31 can be very BAD at detecting garinii and afzelli.

No one has undertaken to seriously acknowledge the many new SPECIES of Bb sensu lato that are now known to be human-pathogenic.

And each of these SPECIES may have a multitude of different STRAINS which may differ genetically among themselves, and differ from Bbss b31, sufficiently to end up undetectable on the serological tests in use.

In fact it's very possible that many people even have Bb sensu stricto strains that DIFFER from B31 sufficiently to make them falsely seronegative.

B31 may be pathogenic in animals in the lab, but that does not prove it is a human-pathogenic strain.

We also need to start acknowledging the role of non-burgdorferi Borrelia like miyamotoi (which could be the tip of the iceberg in terms of non-Bb Lyme-causing Borrelia.)

We know that Miyamotoi can be PATHOGENIC AS HELL (Dr MacDonald has just isolated it from another batch of Alzheimer brains, and found the plaques are more or less COMPOSED of Borrelia miyamotoi.

So how can we ignore all this, knowing that current tests, including C6 do not pick up miyamotoi at all?!!!

Duncan:

"Second, the B31 strain is found in ticks, is it not? Or something 99.999% analogous to it? "

As I said before, the number of Borrelia strains that have actually had their full genome sequenced is tiny. We have no reason to ASSUME that wild-type Borrelia out there are 99.9% identical genetically to Bbss b31. (We have lots of reasons not to - eg all the strains that were found to have a very different plasmid profile).

We have no reason to ASSUME that wild-type strains in ticks are even 70% genetically identical to b31. How do we know, when no one has sequenced them?

Dr MacDonald has recently found a chimeric Borrelia which is half burgdorferi, half miyamotoi.

What percent "analogous" to B31 might that be?

And how close might the proteins it makes be to those of B31?

And how likely would it be that a serology test based on b31 antigens would detect their infection?

This was not a trivial infection, this too came from the brain of a man who died of Alzheimers.

Duncan, when you say B31 is found in ticks, let me remind you again - B31 is a lab strain more or less created by Alan Barbour when he isolated ONE CELL from ticks, and created a clone from that ONE CELL.

The organism that basically was then used to DEFINE what is and isn't Lyme was created in an extremely artificial manner, by Alan Barbour, a biological warfare officer of the EIS, who was later put in charge of the bioweapons mega-lab at UCI.

(The Lyme coverup is fundamentally a biological warfare coverup, and that is why Steere, Barbour, Baker, Klempner, Tim Brooks in UK, McSweegan, Paul Mead etc etc etc all just "happen" to be biowarfare scientists. The vast majority of the major players in Lyme have been, and continue to be, from that stable.)


Duncan wrote:

" My point is ...registering positives needs to remain meaningful... "

What do you mean by "remain"? How can it "remain" meaningful, when the Denialists have proclaimed it meaningless in so many people, for decades?

That Branda you mentioned earlier (another C6 champion) recently co-authored a paper with the detestable Lantos, arguing that even POSITIVE serology should be ignored if it occurs in people who live in so-called non-endemic areas.

And in fact the Steerites have been pushing that idea for years.

Positive serology is often ignored if it occurs in a patient who has had treatment, however minimal.

Positive serology is routinely ignored if it is IgM, and past the first 30 days or so.

Positive serology is routinely ignored if it's an Elisa and a Blot is negative.

The ONLY time an Elisa is accepted as meaningful by the Denialists is when it occurs in early Lyme, or in someone who has NEVER had abx, and is followed by a positive wetern blot too (and we should perhaps add to that the very restricted list of symptoms that they actually acknowledge as Lyme in the first place.)

"...in the short-term, the strain per se may not be as significant ...as developing tests that compensate for the shifting antigen properties and other immune-evasion techniques employed by Bb."

How does the c6 (or ANY serology test, for that matter)"compensate for immune-evasion techniques employed by Bb?"

You seem to think that the C6 is capable of identifying a large number of cases. Having the C6 as the ONLY Elisa here in Britain has actually slightly decreased our already absurdly low detection rate.

What makes you think that the C6 is good at detecting ANY Lyme - acute or chronic?

Elena

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duncan
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It detected mine. [Smile]
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duncan
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All that prefaced your last question to me is pretty much just preaching to the choir. I agree with most of what you have to say.

You are focused on the negatives - as well we all should be.

I am focused on the integrity of the positives.

There are elements of mainstream Lyme that appear intent on corralling both of those. This we both agree on.

This need not be an adversarial discussion. [Smile]

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Eight Legs Bad
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Duncan, the fact that YOU got a positive no way signifies that others would. That's not scientific.

Of course your pos C6 is valid if u have Lyme symptoms.

The purpose of my thread is to ask if anyone can show me scientific evidence indicating that c6 is a good test.

No one is able to do that, yet we have not ONLY the Steerites but also one llmd, or former LLMD claiming it's sensitive, and many patients confused by this.

One pos does not make a sensitve test. Even in the uk, we have more tahn 1 pos elisa result per year.

In fact, in Northern Ireland they had their highest "official" incidence yet:

SIX!!!

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duncan
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Yes, I am an anecdote. I was specifically responding to your last question of me, i.e., what makes ME personally think it can identify Lyme in acute or late stage.

Who is there that offered a truly independent evaluation of the C6? I don't know if one has been done. This is what I alluded to when I bemoaned the apparent lack of NIH-sponsored studies offering contrary insight into possible tests weaknesses - maybe they're out there, but I couldn't find them.

So you may be right. And I, too, would enjoy seeing such a study.

But I feel I should point out that just because someone might not care for the crowd behind a given test, doesn't invalidate the test.

The BSK medium works pretty well on culturing Bb EM biopsies, for example. Not great, but it gets the job done at times.

The WB has some utility - it's the thresholds that are at issue, the algorithm embraced, and the out-of-hand rejection of IgM values outside of acute stages. This does not include the limitations of the B31 strain, of course.

The C6 is being used liberally these days in the US. It is registering positives. Early on it was being promoted to replace BOTH the ELISA and the WB, but recently has been narrowed to just the old ELISA.

I do not know why it would not work in the UK other than to speculate the strains there - like one newly found in Scotland - maybe without that peptide, or the amino acids are off or whatever.

Sorry - I have been focused on North America. And science and I are a forced relationship

This broad-scale failure you are suggesting in the UK needs to be demonstrated if the test's lack of sensitivity is that striking. Again, you've got to find an independent source to do that work.

Another issue may be reluctance of clinicians to actually even test for Lyme in the UK and Ireland - much as that reluctance manifests in some states in the US, due to unrealistic prevalence dogma, fear of retribution, or peer concerns.

I am just speculating.

Science is not my strength, but I am pretty good at the underlying politics, at least in the US. The politics of the situation suggest an independent source needs to become involved. Government policy won't change simply because someone suspects questionable science.

Easier said than done.

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Eight Legs Bad
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Duncan, no disrespect, but if you think that "NIH-sponsored studies" equates to "a truly independent evaluation", then your grasp of "the underlying politics" is sorely lacking, far worse than your scientific knowledge.

The NIH, CDC and other US federal government health agencies have been suppressing and falsifying vital information on Lyme Borreliosis from the moment Polly Murray first walked into the room and told her story to Dr. Allen Steere, of CDC's Epidemic Intelligence Service.

Borrelia is a sensitive biowarfare-related topic, and has been for decades (since WW2 when the nfamous Japanese Unit 731 studied spirochaetes - see www.elenacook.org/spirowarfare.html )

Hence the coverup which by now has destroyed countless lives - probably in the millions.

As for the science, Duncan, your main problem seems to be, as in the old cliche, you "don't see the forest for the trees".

You studied one "tree" - the C6 Elisa - in such minute detail, that I actually took you for a microbiologist when you spoke about it.

But you missed the "Forest".

What is the "forest"?

Simply this:

ALL antibody-tests are insufficiently sensitive to be used for diagnosis.

when you have a micro-organism that has 1001 tricks to evade the human immune system, you cannot rely on tests based on the immune response to diagnose it.

So, if you had a rising titre of C6 even after abx - yes, that can only be explained by Lyme.

But what about all those who never even had ONE positive result on it, and had the door slammed in their face as a result?

It makes no sense to extrapolate from the case of ONE individual - you - and imagine that there are multitudes of people out there with chronic Lyme , post-abx and rising C6 titres.

And even if Steere , Immunetics etc got their way and every single one of the multi-millions of Lyme tests conducted each year in the USA was done using the C6, anyone positive after the standard short course would STILL be ignored in terms of their continuing infection.

There has not been the slightest wavering of the Denialists from their Denial of chronic Lyme INFECTION in any of their papers or pronouncements about the C6 (or about anything else either).

They would dismiss your result, and anyone else's, as due to a bit of "amorphous debris" containing fragments of C6 peptide, causing an antibody reaction as these tiny bits persist in the body.

Of course that is contrary to everything that is known about dead bacteria in the body, but CDC never let a litle truth get in the way of a good lie.

and finally - it has taken me days and days to be able to reply to you. Why? Because I have been blocked from every single machine I use, no matter what location, no matter what computer, no matter which internet connection.

The staff here are trying to sort this problem out - but why do you think it is happening, Duncan?

I've had censorship and interference with my communications, hacking and death threats, for years.

If there was a SHRED of evidence in favour of the idea that the C6 was useful, would someone need to go to such draconian lengths to deny me my freedom of speech?

All they'd need to do would be get a scientist to come and state the issues.

Right?

Elena

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duncan
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I am personally acquainted with the "bias" of govt agencies.

I know positives do not justify or undo the damage of a single false negative.

I know, too, that the positives of ANY test fall under threat. Including the C6.

For a time, though, there appears to be uncertainty in explaining away persistent elevated C6 values post-treatment.

THIS is what I am pursuing - because I agree: A positive value should strongly suggest continued infection. That they CANNOT explain this away adequately yet is, perhaps, an opportunity to demonstrate they are wrong about chronic infection, by using their own preferred test.

I am sorry for your difficulties posting. I suspect most readers are familiar with your points and agree with them.

I see the forest for the trees, although sometimes I cannot recall which trees I've already encountered, and which forest I've wandered into. NB defies geography in more ways than one. [Smile]

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quote:
I challenge anyone to show me a peer-reviewed article not written by top Denialists outlining a scientifically sound basis for claiming that C6 Elisa is a good screening test.
My view is that Monica Embers, Barhold, Hodzic etc.. who did the seminal research on persistence in Rhesus Macaques have faith in the C6 and discuss some of its limitations in their paper.

This paper stands as one of the strongest pieces of solid scientific evidence that persistence is real. Calling this group denialists would not seem reasonable.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0029914


quote:
The C6 ELISA detects antibodies to a region of the B. burgdorferi VlsE lipoprotein that is immunogenic in infected individuals and common to all infectious variants tested thus far. Not only is the C6 test among the most reliable in terms of accuracy, but it is also a serologic test for Lyme disease that has been used experimentally as a predictor of treatment outcome [8]. In patients with PTLDS, anti-C6 titers were found to generally persist at a low level compared to acute patient titers [9]. To date, the experimental assessment, in animals, of antibiotic treatment effectiveness, measured by the presence or absence of spirochetes, correlated with C6 serologic test reactivity has not been reported.
I am C6 positive by 3 labs
CDC 2T positive IgG
Positive on ALS culture 3 times

https://puurelyrandom.wordpress.com/2014/10/22/concerns-with-cdc-lyme-culture-assessment/

Some research examples.

Its clear the C6 is superior to the CDC 2T across many species but fails when a strain does not have the Vlse C6 peptide. So as with all the tests, it has failures under varied circumstances but if positive has a near 100% specificity.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492927/

http://www.ncbi.nlm.nih.gov/pubmed/24974678

http://www.ncbi.nlm.nih.gov/pubmed/24730472

http://www.ncbi.nlm.nih.gov/pubmed/17234451

[ 09-18-2015, 11:09 PM: Message edited by: elara ]

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Eight Legs Bad
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test -please ignore

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Eight Legs Bad
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I have gone to enormous lengths just to be able to post here. It's very telling that I am being locked out in this way.

Please note - this is not a fault of the moderators, who are trying to resolve the problem.

Friends of mine with similar views are also unable to post. Yet another woman from England, who is very confused and posted in another thread recently in support of our biggest Denialist, was able to get through, no problem.

Why do you think that may be?

I have had to enlist the help of a computer expert to accompany me to an internet cafe, just to be able to post here! I don't have a problem posting from this pc to any non-Lyme-related site.

Anyway, let me reply before I am prevented again.

Elara, your information does not stand up to my challenge one bit.

Before I explain why (in my next post), I'm just going to say something about Embers etc.

You are correct that Embers, Barthold etc are not Denialists.

But what they are, is scientists who did not find the courage in themselves to stand up to their Denialist bosses and funders and career-determiners at NIH and other US govt agencies.

It's true that when Dr Barthold retired, he did mention that he and his colleagues had been forced to censor their own work.

But why did he wait several DECADES to tell us that?

Decades during which he and the others trimmed and tweaked and edited their results to suit their Denialist masters?

Embers, Barthold etc are not Denialists - but they ARE people who will do what NIH, CDC etc order them to do, even when it means that MULTITUDES of PEOPLE WITH CHRONIC BORRELIA INFECTION WILL BE HARMED BY IT.

The arch-Denialist Phil Baker had an online confrontation with the Lyme community when this study was finally released (12 YEARS LATE, and after the deeply flawed Klempner study had been allowed to dictate policy all over the world, condemning Lyme patients to NON_TREATMENT) . At that time someone threatened to contact Embers et al.

He said "Go right ahead!" or words to that effect.

Why? Why do you think he was he so unconcerned?

I can tel you why.

Because he KNOWS they will never do anything that really oversteps the mark - and if they do, they can always be pressured to retract it, and they will cave to that pressure.

Embers, Barthold etc are NOT Dr Alan MacDonald, or our ILADS doctors.

They are not even equivalent of the NIH researcher who, ordered to stand outside Burgdofer's house and prevent the Under our Skin team from discussing persistence with him during a planned interview, MESSED UP the task he had been ordered to do, and said clearly he did not want to be doing it.

They are not Denialists, but they are TAME. And that is exactly why they are so useful to the Denialists.

Using the Stratfor Strategy, CDC et al try to confuse and disarm us by making us believe that researchers such as Barthold, Embers etc who try to straddle a non-existent "middle ground", are the way forward.

They know if we follow them, they (the Denialists) will ALWAYS retain control, because Barthold etc are still under their control.

We need to back researchers who are crystal clear that chronic Lyme exists and that serology is NOT suitable for Lyme diagnosis. There is NO middle ground between saying that chronic Lyme exists and saying that it doesn't.

Elena

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Eight Legs Bad
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Now regarding your allegation that the Embers et al study (original, uncensored version (or the most uncensored version in the public domain that we know of)somehow supports C6, read Lorraine Johnson's take on that (which was difficult for me to find, as the link had become corrupted):

"LYMEPOLICYWONK: Embers Monkey Trials Part 4. Lab Tests Fail to Detect Lyme Disease.

This is Part 4 of a series on the Embers study of Lyme disease in non-human primates.
...

Embers evaluated the C6 antibody test to see if its results accurately reflected active infection. It was believed that the C6 might permit researchers to determine whether treatment cleared infection.

However, the study concludes:

'Reliable procedures to determine that infection has been cleared from Lyme disease patients have NOT been established.'

Moreover, the study demonstrated that the ability of the C6 to detect active infection generally was POOR.

Although the test detected infection in 100% of the inoculated monkeys at 4 months, after this period it failed to detect active infection in 60% of untreated monkeys in the study and in 100% of infected monkeys that received treatment.

All antibody lab tests, like the C6, are INDIRECT measures of infection. Rather than detecting the bacteria directly, they detect antibodies produced by the patient’s immune system to bacteria.

When the patient’s immune response fails to detect infection, the antibodies that the lab tests measures are not produced. This results in a negative lab test.

The Embers study compared the C6 antibody test with more direct measures of infection, including PCR, culture, immunofluorescence (visualization of spirochetes in inflammatory lesions), and something called xenodiagnosis.

(Xenodiagnosis allows uninfected ticks to feed on the monkey and then examines the ticks for Bb. The use of xenodiagnosis in humans in controversial.)

The Embers study found that even when there was DIRECT evidence of persistent infection found through invasive tissue sampling, the C6 blood test FAILED to detect it.

This suggests that the C6 test should NOT be used for diagnosis since with the passage of time those who have the infection will test negative and anyone previously treated with antibiotics will test negative.

The researchers believed that the reason the C6 test became insensitive in the treated monkeys was that the number of spirochetes may have been reduced or had become a dormant form of bacteria that does not produce the antigens necessary for the C6 test to be accurate.

No explanation was offered for the insensitivity of the test on 50% of the non-treated monkeys.

The insensitivity of the C6 antibody test may apply to other antibody tests as well.

This is important because it may explain why patients with persistent manifestations of Lyme disease often test negative on lab tests. Embers suggests that patients may have persistent infection even if they test negative on an antibody lab test.

This is consistent with the fact that other commercial antibody lab tests in Lyme disease fail to detect disease roughly 50% of the time. If lab tests are this insensitive–in fact, no better than a coin toss for diagnosing Lyme disease, they should not be required for diagnosis.

Yet, this is what the IDSA Lyme guidelines require. The Embers study suggests that this requirement will leave many patients who have Lyme disease undiagnosed and untreated."

End of quote from L Johnson. Boldface and capitalisation mine.

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Eight Legs Bad
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And finally...

Why do you feel the need, Elara, to expend so much energy promoting the highly insensitive C6 elisa, when you say you ALSO had 3 positive results on the culture test developed by Dr Alan MacDonald and Dr Eva Sapi, which, unlike any Elisa, is a GOLD-STANDARD proof of lyme?

Why are you not defending that test, which would give you far better and more concrete proof than ANY serological test in the world.

Culture is always the Gold Standard. If you can grow a bug from someone's blood, csf etc, it meamns it's bloody well there.

BEYOND ALL SCIENTIFIC DOUBT.

If you have a positve antibody test, all you can ever say for sure BEYOND ALL SCIENTIFIC DOUBT is that antibodies (not the bug) was there.

The allegation by CDC that the culture test was invalid due to "contamination" is FALSE and is hurting not just everyone who took that test and was positive (which includes you, according to your biog here, as you say you had a pos THREE times!), but also everyone who could theoretically benefit from that test - which could be thousands and thousands of people.

You have been publicising CDC's condemnation of the culture test for over a year, and now you quote the "purely random" blog which was written by McSweegan to muddy the waters and to try and recoup the credibility he lost when he infiltrated the Lyme forums (for the Nth time) , pretnding to be a "knowledgeable but non-scientist patient", calling himself LHCTom and using the name Thomas Eames.

Dr MacDonald came here in person and smoked him out as Ed McSweegan.

That blog you have quoted here - if you read it to the end - contains nothing but a pathetic attempt to fool patients into thinking the culture test is invalid, by claiming that CDC got most things wrong, but there STILL was contamination.

It's a baseless accusation, and it is aimed at discrediting a gold-standard test, and moreover one which you have said you yourself had a positive result THREE TIMES.

So why are you so keen to promote it?

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duncan
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Just as I cautioned against condemning a test simply because you don't care for some of the people who advocate for that test...

...you should not necessarily completely endorse a test simply by virtue of liking its advocates.

As far as I know, the ALS test has yet to be validated. In the real world - the world of insurance and disability claims - this matters.

The test needs to be validated. Once it is, many things will change.

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sorry
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Eight Legs Bad
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Duncan, why don't you campaign to defend Dr MacDonald and Dr Sapi's culture test, rather than the Steerites' fave, the C6?

We KNOW the culture test is valid. But CDC has already destroyed its credibility with baseless accusations of contamination.

Why aren't you speaking out against that?

I have spoken to hundreds of patients around the world and read thouands of posts in the last dozen years or so, and you and Elara are the first ones I have ever heard of who have had repeated positive c6 Elisas.

I know many who had negative c6 Elisas.

I know many who had their lives ruined by negative c6 elisas too.

The Denialist are in love with the C6 for many reaons, including but not limited to the following.

1. Like all Elisas, it's insensitive as a diagnostic test , for the simple reason that Borrelia has endless immune-evasion mechanisms.

2. It is an excellent Elisa to use when you want to market a useless and/or dangerous Lyme vaccine (which seems to be on the cards again), as it does not contain anything that would show up in a vaccinated person (whereas whole cell Elisas might).

3. It's a great way to avoid the scenario whereby someone realises that insensitive as serology is, you may still get a slightly better detection rate if you use an Elisa based on local strains, rather than the bog-standard Bb ss B31 strain which no human being has ever been known to have.

The reason you can avoid this, is because the protein from which C6 is made is not normally expressed in vitro. Sso it's extremely hard to isolate it from a natural strain. (It's a synthetic peptide.)

This helps keep the incidence and prevalence rate down too - artificially of course.

4. Replacing the western blot with the C6 means the Denialists don't have to deal wih those embarrassing positive IgM blots (IgM is always a sign of ongoing/recent infection).

Also, they dont have to worry about labs like Igenex which use a more realistic interpretation of the blot, or anyone using non-B31 strains which might get a better yield.

No doubt the Denialists will use their Persona Management System to create 100 fictitious personas to join this thread, all claiming they have ragingly positive C6's.

All with absurdly weak alibis - like claiming to be telecoms execs who "just happen" to be thoroughly conversant with borrelia microbiology at a professional level, as McSweegan has done here.

Elena

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duncan
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The credibility of the ALS test was not destroyed by the CDC. Yes, it took a hit, but many could see that attack for what it was.

I lived through the XMRV test debacle. We do not want anything near a repeat of that. When that test was shot down, the entire CFS community arguably took a hit with it. The culture test needs to be validated. Once it is, its credibility should be renewed.

I, too, was a telecom exec once in my life. I happen to be pretty conversant about Lyme as well.

I think the window of the C6 replacing the WB has narrowed, but it is still a little ajar - I agree, we do not want the C6 to replace the WB.

(I do not understand why the WB alone hasn't become the defacto Bb test...well, I do, but Geez, you'd think someone from outside the Lyme community in microbiology would speak out.)

BTW, as you know, I like the C6 because I think it may at times demonstrate persistence post-treatment (at least in terms of elevated antibodies), and I like to think I have been, occasionally, a denialist's bad dream (if only a wee bit).

[ 09-23-2015, 04:14 PM: Message edited by: duncan ]

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Eight Legs Bad
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You wrote:
:
"The credibility of the ALS test was not destroyed by the CDC. Yes, it took a hit, but many could see that attack for what it was."

Patients familiar with the integrity of the doctors concerned could see it for what it was.

But it's not patients that diagnose - it's doctors.

We have no reason to suppose that the false allegation was "seen through" by the tens of thousands of doctors who read the libellous CDC allegations on the CDC website, or on Medscape, on medical newsfeeds, or even in the mass media (as CDC made sure it went out there as well).

Those tens of thousands of doctors do not have expertise in Borrelial pyrG DNA sequences, and other minute details of the microbiology of Lyme.

Nor do they have time to acquire that expertise. So they rely on authorities like CDC to give good guidance.

If the CDC was just a public health agency, that reliance would be fine.

But it's not.

The average doctor (or member of the public) does not understand the interference and deliberate corruption of the Lyme science that has been going on, courtesy of the military core within the CDC.

Most of this is attributable to the EIS, which effectively controls both the Lyme programme and the CDC itself(as CDC directors are drawn from its ranks).

Duncan wrote:

"I lived through the XMRV test debacle. We do not want anything near a repeat of that. When that test was shot down, the entire CFS community arguably took a hit with it."

XMRV was shot down by another leading biological warfare scientist, Ian Lipkin.

In this country Simon Wessely, leader of the all-chronic-infectious-disease-is-just-in-your-head-school of malpractice, (who has also been funded by our Ministry of Defence to deny the existence of Gulf War Syndrome), wrote a paper claiming he had tested ME/CFS patients' blood and found every single one negative.

The study probably belongs in the Guiness Book of Records for the fastest ever rushing of an article through peer review.

Does xmrv play a role in ME/CFS or Lyme? I have no idea. But when you're dealing with a biowarfare-related denial, it doesn't make sense to rely on studies done by biowarfare scientists, or military-funded quack psychiatrists like Simon Wessely.

Duncan wrote, (referring to my observation that McSweegan infiltrated LymeNet pretending to be a telecoms executive) :

"I, too, was a telecom exec once in my life. I happen to be pretty conversant about Lyme as well."

A telecoms exec too? Wow! What a coincidence.

Ah, but my point was that McSweegan used a false alias as a telecoms exec, when he is of course much more than just "pretty conversant" with Lyme science.

As the former NIH Lyme Programme Officer, he is fully conversant with Lyme science - and more to the point - fully conversant with falsifying it.

" I like to think I have been, occasionally, a denialist's bad dream"

Actually, Duncan, atm you are more of a Denialist's dream-come-true.

Let's face it, it's not every day they find a Lyme patient who actually agrees with one of their goals.

And who spends a lot of time and energy trying to convince the rest of us of the need to make the C6 the universal testing modality.


Elena

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duncan
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Well, we will have to disagree about how to further the cause, then, at least in regard to a couple of the particulars.

You should not put words in my mouth, though. Their goal is not to use the C6 to demonstrate continued infection, post-treatment - at least not to my knowledge.

Nor should you intimate that my intentions are not 100% behind removing barriers to TBD patients' relief. The integrity of my support for my fellow Lyme patients is unimpeachable.

And yes, Elena, I was a telecom exec. And I know quite a bit about Lyme. Yet I am a staunch Lyme advocate for our patient community. What does that suggest?

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duncan
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Moreover, let's clarify a couple of things.

First, the CDC did not destroy the credibility of the culture test. It may have damaged it, but that credibility is not dead. I know patients and clinicians who unwaveringly support it still. Validation would resuscitate it fully, I firmly believe.

Yes, clinicians rely on the CDC for cliff notes, but validation would thrust that test right back into the limelight, and not even the CDC would easily be able to undo that.

Second, Lipkin did not shoot down XMRV. He was merely the last blow in the eyes of many. He had a number of individuals who preceded him, including Wessely, but also several virologists.

As for the universal testing modality - until there is a reliable and validated culture test, I support the WB. I also support reducing the appalling thresholds for a Lyme diagnosis thru the WB. I have said this to you more than once, I think.

I think you need to get better at reading who is an ally.

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TNT
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quote:
Originally posted by duncan:
I think you need to get better at reading who is an ally.

I agree. I have been following some of these threads Eight Legs, and if you continue to attack those who are obviously on your side and supporting you (and the gist of everything you promote), you are eventually not going to have any allies.

We here are not your enemies. Stop trying to sniff one out.

We believe the cover-up. It doesn't take a rocket scientist to see it. But thank you for sharing some of the not-so-obvious details.

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Eight Legs Bad
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Calm down, everyone! Why are you all getting your knickers in a twist? I didn't make any accusations against Duncan.

I simply mentioned that McSweegan was here pretending to be a patient and using a ridiculous alibi (a telecoms exec who "just happened" to have the kind of extensive and detailed knowledge of Lyme microbiology that only a professional microbiologist specialising in Lyme would have.)

At that point Duncan said that he was a telecoms executive too, and I observed that that was a co-incidence.

I did not say that Duncan was a spy or that he was McSweegan.

If Duncan had extensive knowledge of the sort that only a scientist would know,then coupled with his saying that he was "just a patient", that would be a justification for suspicion.

But Duncan has clearly shown that he has only the most superficial knowledge of science (though he has picked up a few jargon words.) Therefore his claim that he is a telecoms exec with no scientific background whatsoever is credible.

Unfortunately, Duncan, you are out of your depth in grappling with science.

You see, one of the most fundamental principles of science is that broad conclusions cannot be drawn from very small sample sizes - nad you have presented us with smallest sample size of all - one (ie just one single case - yours).

You say you have had a rising titre on the C6, and you apparently believe that meets my challenge, which was for anyone to provide me with valid scientific evidence that the C6 is a good test.

But you have no evidence whatsoever that many chronic Lyme patients are showing rising titres of C6 on a regular basis.

And there is much evidence to show that your situation is exceptional, not the rule.

ILADS have found that the C6 performs just as appallingly as any other Elisa - and that is why they denounce it.

In Britain, for example, the number of negatives on the C6 Elisa tends to hover around the 90% figure.

Now, certainly, we can't presume that every single one of those was a false negative.

But I can tell you that it is likely that a very large proportion of them WERE false negatives. Why?

Because the level of awareness of Lyme in this country is so appalling that before a person could ever succeed in persuading their doctor to do a Lyme test, they would have to pass a large number of criteria first:

!. They or their doctor would have to be aware that Lyme disease exists (most members of the public have never heard of it, and most doctors know of it only as an extremely "rare" disease - self-fulfilling prophecy thanks to our public health agency's neglgigence.

2. In the absence of EM rash it is highly unlikely that ANY UK doctor would ever think of Lyme (and we repeatedly hear of those who wont consider it even when the patient presents with a giant bullseye target in a hyperendemic area - once again, thanks to the total failure of our public health to make it an important issue on doctors' radar screens.

3. If they lived in an area outside the few which have been named as "hotspots" - even more unlikely, as doctors everywhere else tend to believe "We don't have it in this area." (Even though Lyme-carrying ticks have been found country-wide, including in the heart of central London.)

4. If the patient did not remember a tickbite and had no EM rash, the chances of a doctor agreeing to do a Lyme test are somewhat slimmer than the average person's chance of hitting a lottery jackpot....

And so on.

So in sum, the pre-test probability of a UK patient having Lyme if they have actually got to the point where their doctor will test them is EXTREMELY HIGH.

Our 90% C6-negative figures are excellent evidence that the C6 FAILS dismally.

Duncan may be the only chronic Lyme patient in the world, for all we know, who has experienced a rising C6 titre.

So your analysis, Duncan, is extremely unscientific, I'm afraid - and that differentiates you from McSweegan, who came here showing very detailed scientific knowledge - and then tried to use his knowledge to pervert science, and to hurt all the people he already hurt so much when he was NIH Lyme officer, even more.

Is Duncan an ally? Objectively, no,whatever his intentions, because by supporting the Denialists' views on the C6, he's not doing the rest of us any good.

Wormser, Steere, Marques etc have spent many decades denying chronic Lyme and causing mass misery.

They are not about to promote a sensitive testing method that would allow the world to discover that their policies all these years have been fraudulent and criminally negligent, and thus opening themselves up to a class action and the possibility of prison.

They champion the C6 elisa because it helps them guarantee a paltry detection rate.

It will also facilitate the introduction of another useless - if not downright dangerous - vaccine, as the C6 will never show up in vaccinees.

Is Duncan deliberately trying to deceive us, as McSweegan and his cronies have so many times before?

I have not said that.

But I would make a general observation here:

Just because someone comes here and says words that appear to be in sympathy with patients, that does not prove that that person is an ally or that they are who they claim to be,.

Let's face it, people on this forum are here more or less anonymously.

So unless you know someone very well personally, or know someone absolutely trustworthy who can vouch for them, the fact is, you don't know who anyone is or what their motives are in being here.

I think it is vital that people can participate here anonymously - don't get me wrong.

Patients need a safe space to talk frankly about their problems without fear of retribution from an insurance company, an employer etc.

But I personally think we do need some sort of system to stop people becoming prey to the Persona Management System that the Denialists have deployed to harm us - again and again and again - both here and on many other forums.

So TNT, I respectfully suggest that YOU don't know if Duncan is an ally or not yourself, as when you wrote to me to tell me that Duncan was extremely scientifically knowledgeable, you said you did not know if Duncan was a man or a woman.

If you don't even know what sex Duncan is (and he/she is perfectly entitled to conceal that if he/she wishes), then clearly you don't KNOW him/her, you are just assuming that Duncan is an ally because he says he is.

Once again, I am highlighting this point as a GENERAL issue - I did not say that Duncan is a spy.

I'm merely pointing out to TNT - and anyone else - that is dangerous to assume that someone is on our side just because they say they are.

I have met scores of Lyme patients in person, I have ILADS doctors who can vouch for me - and so do others on this forum.

Others may be perfectly genuine, but not be in the position to have someone vouch for them.

Still others may be evil people who have come here to do manipulate and hurt us.

I have spoken to people who participated in the Klempner trials, and they have told me how kind, how exmpathetic and how much "on our side" he **appeared** to be.

Then he went out there and battered us to bits.

Elena

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duncan
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Well, so I'm apparently ignorant or stupid or a tool or a spy.

Yeah, I'm going to say thanks, but no thanks to all of your smears.

I know enough of the Science to make a difference for Lyme advocacy - I think in a good way. I also have placed myself on the Lyme front lines, and I paid a price for that. I continue to do so.

You are categorically insulting (at the least) and wrong in how you characterize me. I suspect you have been wrong at others' expense as well.

Listen to yourself. Do you actually believe I am the only C6 positive with a rising titer? I talk to clinicians and we discuss - frequently - the unexpected qualities of the C6 they have seen in their practice; qualities like being positive after treatment or values turning negative while maintaining symptoms, etc.

I also talk to manufacturers and the C6 supporters to get their explanations. I have spoken directly with companies and labs and testing facilities like Imugen and Immunetics and IGeneX and Stony Brook and Columbia about all kinds of Bb tests and testing issues. I discuss with smart individuals who do not support the C6 or think it is a bad test (people like you, Elena), or think its utility is constrained to acute or early disseminated cases.

I weigh all the data I can get, both published, and by those who do the writing or testing or protesting, whenever possible.

I won't name names, but everybody here would know most of the experts with whom I have communicated. I engage the PEOPLE behind the politics. I do NOT sit on my ass and take pot shots at fellow advocates who might disagree with my focus.

Do you actually think I am making this stuff up?

You can make good points but you take them to the extreme, and that is seldom good.

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Eight Legs Bad
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Duncan wrote:

"Listen to yourself. Do you actually believe I am the only C6 positive with a rising titer?"

I believe it's pretty rare for any CHRONIC Lyme patient to get two postive C6's in a row, with a rising titre on the second. You're the first person I know of who has said they have it.

If this was not a very rare phenomenon, why would ILADS be saying this:

"Unfortunately the C6 Elisa lacks adequate sensitivity for clinical use" (Source: ILADS leaflet for physicians, www.ilads.org)

" I do NOT sit on my ass and take pot shots at fellow advocates..."

I am pointing out that your claim that the C6 is a "good test" (I assume that's what you're trying to say) is wrong, and is harmful for patients.

I am pointing that out with facts, not hearsay.

Sit on my ****? Well, you know nothing about me Duncan.

I have been researching, writing and campaigning over Lyme for the past 13 years. I was the London organiser of the demonstration against Simon Wessely in 2006, and the main organiser of the SAA launch meeting with Dr MacDonald in 2014.

Over the years I have put up with non-stop censorship, non-stop harassment, death threats from McSweegan and his cronies, and two attempts to have me locked up indefinitely, both of which failed.

But still I carry on, Duncan. And if one day McSweegan does carry out his threat - many more will carry on where I left off.

My choice, Duncan.

I have not said you are stupid. I said that the things you are claiming are not scientific.

I also said that if you think that "NIH-funded studies" equates to independent studies, then you don't understand the politics of Lyme.

But that does not mean you're stupid, Duncan.

On the contrary, I KNOW you're not stupid.

How do I know? Well, firstly, you said you are a telecoms exec. Obviously someone who was stupid could never rise to that position.

Secondly, I had a look at your website, and I notice it is in Japanese. That's an extraordinarily hard language to master, IMO, and so you are even more obviosuly intelligent in that not only do you have brilliant linguistic skills, you were able to carve a market share for your telecoms company in Japan, which is, after all, a leader in that field (Motorola, Nokia, Samsung etc).

And not only that, but you are such a brilliant linguist and entrepreneur that you have carved such a swathe in the Japanese market that you were able to turn your back on the west altogether.

This I conclude because there is not a single word of English on your website.

I take my hat off to you!

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duncan
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Um, I do not have a Japanese website.

I do not have ANY website.

I have absolutely no idea what you are talking about.

Also, there are unintelligent telecom execs out there. There are. Sorry, telecom is not immune from intelligence issues in some of its practitioners. Few industries are.

Not sure I equated, in any absolute sense, NIH-funded studies with all independent studies.

Ok, I get you don't like the C6. But we deal with what we must. We are adults. And I think the C6 does have some virtues. Tar and feather me.

One of those virtues - the one key for me - is I believe it is sensitive to infections post treatment. If I am right, that's a big friggen deal! I am trying to find out if I am right or wrong.

That does not mean I don't support exposing weaknesses of the C6 or any other Lyme test. I DO support that. I'm on your side!

Just because I come at this from a different vantage is ok, Elena.

And, er, no website kiddo. Nada. None. Sorry, I do not know how to write No Website in Japanese. [Smile]

ETA: It is possible you've stumbled upon an old Japanese "interpretation/translation" of my old company website. It is neither my website, nor my old company's, if in fact that is what you have found. I still do not speak Japanese, nor did anyone in my old company.

That is the only possible explanation for what you have written - and even then, it is irrelavent as it has no bearing on me personally.

[ 09-30-2015, 05:32 PM: Message edited by: duncan ]

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duncan
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BTW, I have never had a negative C6. I have like 10 positive C6's.

I've never had a negative conventional ELISA, either.

I have been 2T positive (IgG's) something like 20 or 25 times over the past decade.

My WB has dipped into four band territory a couple of times, but usually is five or more IgG's. Also occasionally IgM positive, but this is much less frequent.

I meet IDSA requirements for NeuroBorreliosis, but have never been approved for Rocephen.So never received IV therapy.

Which suggests a very active infection.

See why I think my C6 value may reflect that, especially when you frame it in the context that the C6 is supposed to decline dramatically once Bb has been successfully treated?

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miyamotoi
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I'll have to agree with Duncan here.

I was positive by Immunetics C6 by multiple labs and ALS culture positive and IGenex IgG Western Blot positive by 5/10 antibodies and 4/10 at Stony Brook.

I was treated with about 2 years with various ABX combinations. My C6 was originally 1.8 and rose to 2.0 - a lab variation?

After the 2 years of oral ABX combinations, my C6 was tested earlier this year and it was .91 which is on the equivocal borderline.

So I happen to be another case with a positive C6 which rose a little once before ABX and about 3 years later, its declined to borderline negative.

The C6 was tested at Stony Brook and IGenex which closely matched. I have no experience at its broad effectiveness but in my case and I'm suspecting Duncan's case, it added credibility to doubting doctors.

Given the problems with insurance and mainstream doctor belief systems, a positive C6 helps with care.

Anyone who is lucky enough to get a mainstream positive test result is good for their own care.

That doesn't mean the C6 is effective in many cases. It just means a person who gets the test, and its positive, receives a little more credibility from disbelievers.

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Eight Legs Bad
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test

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Eight Legs Bad
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Sorry about the test. It's incredibly difficult still for me to access this forum.

If you haver had 25 positive results on the Steerites' 2-tier protocol as well as 10 positive C6's, then you are a medical curiosity.

As for the Japanese issue, well, you gave what you said was the name of your company and your name to people in the Lyme community. The name matches the name of the company, and the Japanese website is the website listed in official directories as the one that belonged to your company.

For the sake of your confidentiality I am not mentioning your name nor your company's name here.

Perhaps it is a Japanese translation of your company's site - I don't see the English original though. Did they move operations to Japan?

And while we're on the subject of telecoms execs, I'm thrilled to report that a British billionaire telecoms exec - a real one, unlike McSweegan's phony "Tom Eames" persona - has been talking on national TV about the uselessness of the antibody tests, about the epidemic Of Lyme and the links with Alzheimer's, MS, etc..

This went out on a programme with MILLIONS of viewers.

Aren't you thrilled, Duncan?

Elena

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Justice will be ours.

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Eight Legs Bad
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Oh, I forgot to post the link :

https://www.youtube.com/watch?v=Y24QL-H5ZLU&sns=fb&app=desktop

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Justice will be ours.

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duncan
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What?!? Millions you say??

Curses!!! AAARRRGGGHHHH!!!!!

Sigh.

Give it a rest, Elena.

Actually, I have already seen this clip, and I have written about it on a different forum.

It could be a good development for the greater Lyme cause in terms of visibility and financial clout. We will need to see how it unfurls.

But I feel for this gentleman and his wife and children. To have your entire family stricken has to be a terrible thing. So I wouldn't say I am "thrilled" about it. I seldom get thrilled about anything these days, though.

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Eight Legs Bad
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Duncan wrote:

"Give it a rest, Elena."

Give what a rest?

"But I feel for this gentleman and his wife and children."

Do you feel for the many thousands of men, women and children in his country who have been left to rot as a direct result of a negative Elisa - a negative **C6** Elisa?

"To have your entire family stricken has to be a terrible thing. So I wouldn't say I am "thrilled" about it."

Give it a rest, Duncan. No one in the Lyme communtiy is "thrilled" about the John Caudwell's family being sick. EVERYONE is thrilled that he is all over the media talking about the scandalous negligence that is going on.

We have never ever had so much media attention on Lyme Disease, its connections with Alzheimer's , motor neurone disease, MS, ME/CFS etc etc, and the appalling insensitivity of the current tests.

The mainstay of which is the C6 elisa.

Approximately 12000 people were tested for Lyme in the last years for which figures are available.

Ninety percent of them were negative.

As for your company's Japanese website, Duncan - the details you gave to people in the Lyme community correspond to a particular website. I am not mentioning it here for the sake of your confidentiality.

The website is in Japanese.

Oh, and Screen Name Miyamotoi, I'm wondering why you chose the name "Miyamotoi", when you appear to be such a C6 fan. Were you unaware that the C6 Elisa is totally incapable of detecting Borrelia miyamotoi?

Elena

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Justice will be ours.

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duncan
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The fact that you obsess about what may or may not be a translated version of a website for a defunct company of mine from many years ago kinda creeps me out. I offered up some private information as proof of I am who I say; you holding that over my head like a threat is not cool.

That aside, I cannot speak in depth to the negative deficiencies of the C6, but you can, and that is cool.

I, however, can speak to its purported utility. I can also say I test positive with the C6 and I have consistently for many years. I know other people who have, too. In fact, my C6 titers actually rose for a couple years both while on and off abx. To this day, they remain positive despite multiple abx cocktails over sustained periods far exceeding 30 days or 60 days or 90 days.

It shouldn't work that way. So, it has piqued my interest - an admittedly vested interest. That bothers some in mainstream Lyme, and I think I know why. I think it is important.

Now, I have tried to explain that several times.

I am a patient. Really.

I don't think I am a dupe, but maybe so. Regardless, my C6 results cannot be comfortably explained.

I get that I am an anecdote. But I don't mind; we relate (and relay) from experience.

As for whether I feel for all the people who get the sh*t end of a bad test....Let's hope your question was merely frustrated rhetoric rooted in poor judgement.

[ 10-16-2015, 04:33 PM: Message edited by: duncan ]

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TNT
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The scientific back and forth here on this thread about testing is great. But the personal attacks (mainly one way) is pretty low. And I'm being euphemistic!

Very disappointing. So unprofessional.

It literally makes me wonder what coinfections are out of control.

This forum shouldn't be a place where people have to personally defend themselves. If there is legitimate concern and evidence of a troll (where one has been found out), that should be taken to the moderators. Direct accusations do not make the forum an enjoyable place.

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Lymetoo
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Everyone here is free to use "report a post" when necessary.

--------------------
--Lymetutu--
Opinions, not medical advice!

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miyamotoi
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quote:
Oh, and Screen Name Miyamotoi, I'm wondering why you chose the name "Miyamotoi", when you appear to be such a C6 fan. Were you unaware that the C6 Elisa is totally incapable of detecting Borrelia miyamotoi?
What is the point besides just being mean spirited to criticize a screen name choice based on a test detection capability?

I've yet to find any good sources that discuses whether the C6 detects Bm. It does have the advantage of detecting a wider Bb species when it works.

That is a good thing since the current CDC 2T is based on single B31 antigen set and is known to miss European and other species. So if you are unlucky enough to get Bg or Ba or any of a dozen species, the C6 might catch it. The CDC 2T won't.

And US doctors don't have any way I've found of arranging a European test easily, so the C6 as an adjunct could help in a thorough analysis.

http://cid.oxfordjournals.org/content/early/2013/05/02/cid.cit238.full


Of course it has its problems. They all do. The problem is in part how doctors interpret results with any negative = negative.

Why stretch to find such a weird way of criticizing someone just because of my experience with a positive C6 like Duncan. [hi]

Please lighten up as I believe Duncan is one of the good guys helping and just because we both tested positive on the C6 means no ore than that.

The choice of screen names was based on the comical process of the realization its a big problem the mainstream dropped the ball on over and over. It has nothing to do with a test I was positive on.

There are a lot of people struggling including myself and Duncan and are on the good side.

[group hug] [group hug] [group hug] [group hug]

Its not helpful to go beyond giving your views rather than attack Duncan over and your stretch to criticize my screen name???

Please lighten up. I'm sure the mainstream is smiling [bonk] when they see us bicker. Can't you see its not helpful beyond giving your views and experience.

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Eight Legs Bad
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Posted by miyamotoi:

"I've yet to find any good sources that discuses whether the C6 detects Bm."

What about this:

" Of the 36 B. miyamotoi sensu lato–seropositive study participants without a clinical history of Lyme disease within the previous 2 years, ... 6 (16.7%) had test results positive for C6 ELISA."

( Krause et al 2014)

So over 83% of Borrelia miyamotoi-infected patients were negative on the C6 elisa.

And the above was published by CDC in their EID journal, based on the work of a team including many of the Denialists actually pushing the C6 as a good test, like Wormser!

"Miyamotoi", you also suggested that the C6 might somehow be better at detecting European strains.

What in God's name gave you that impression?

Have you not read the stats I've quoted from Britain, where Garinii is supposed to be far commoner than Bb sensu stricto, and where we use the C6 exclusively as our first tier of the 2T test.

The C6 eliminated over 90% of British people tested, putting us at the BOTTOM of the league tables for Lyme incidence in Europe?

Elena

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

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duncan
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I'm assuming Krause is Peter Krause? He seems to be the IDSA/YaleHarvardHopkins miyamotoi point man.

You'll recognize his name from 2006 Guidelines.

He is/was also their Babesia maven. I actually spoke to him on the phone once about my possibly having Babesia, and the long-term implications, even with treatment.

I never did receive treatment, but not because of him.

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WakeUp
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Lyme diagnostic tests are like electronic voting machines--- very easy to manipulate by any dark force that has the means and motive to set an agenda and control the process..

Personally I think that, given the politics and nature of the coverup regarding diagnostic tests, Liveblood microscopy is the best way to track a Lyme infection -- at least at this point in time. Microscopy also shows intracellular infection.

Experienced Live Blood Microscopists have noticed that once the number of live spirochetes they see in blood is down to less than 5 in one hour, most people do not have symptoms! This is a very useful observation.

Also, why not use MacDonald's amyloid plaque staining to test for probable lyme biofilm in Live blood to determine the extent of biofilm infiltration?

Personally I think diagnostic testing is a giant red herring that will just delay the development of a cure and divert resources.. I don't waste my money on it anymore, and my doctor (the president of ILADS) no longer takes my insurance.

If the process of approving diagnostic tests were fair, it would be much better than Live blood microscopy, but since the process isn't fair and is shrouded in lies and deceit--- we need to stop putting endless energy into it.

Lets just call a spade a spade--- liars have created these tests and at least right now, control the approval process.

Trying to make things fair is admirable, but what we need is a CURE first--- and then-- maybe more accurate tests, based on scientific truth----- and not junk science lies.

Eventually the liars will shrivel back into their hidey holes.

My diagnostic tests have always been basically negative, yet I have had three bullseye rashes over the years and my symptoms got much better on antibiotics, and then reverted once I was off antibiotics..

The current diagnostic tests are completely unreliable-- and no new approved test is likely to be accurate based on the politics of the ongoing Lyme coverup.

Key people on these committees have probably taken large bribes (the $600,000 suitcase). The process is corrupt.

We should just put our energy into financing the finding of cures first -- this should be our priority as sick people.


There are literally thousands of natural plant based compounds that can and will cure--- meaning we don't even have to go through the corrupt FDA process if we look at natural plants.

Plants do not have a real immune system--- so they rely on chemicals to deter parasites, biofilm and bacteria.

How nice plants are for us........

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