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CMAJ questions reliability of lyme testing

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
COMMENTARY
Reliable testing for Lyme
Lyme specialty labs frequently produce false-positive results and fail clients

One half of a paper/commentary pairing that appeared a couple of days ago in the Canadian Medical Association Journal - http://www.cmaj.ca/content/early/2015/08/31/cmaj.150874

A related paper here: http://www.cmaj.ca/content/early/2015/08/31/cmaj.141413

Unfortunately, both require payment, even the commentary. Which means most Canadians will only see this sort of report:

“After getting a negative test in Canada, some people still think their symptoms are caused by Lyme, and they read on the Internet that these specialty labs are better,” said Gregson. “But they’re not better at picking up Lyme, and are actually producing more false-positive results.”

He said the standard Lyme symptoms — joint pain, rash, headaches — are pretty general, which can be frustrating for patients seeking answers.

“People are just looking for a cause of their symptoms. They want something that’s treatable. They’re looking for relief, so they think ‘well, maybe Lyme is the cause, I’ll go get my tests done as recommended by all these other people on the Internet.’”

Gregson said a specific testing method is causing all the false-positive diagnoses.

“There’s a testing method called the western blot, which looks at multiple antibodies on a single testing strip. We have specific criteria for positive results.”

Source: The Chronicle Herald, Nova Scotia - http://thechronicleherald.ca/novascotia/1308872-false-positive-lyme-tests-worry-researcher
 

msf

Senior Member
Messages
3,650
“After getting a negative test in Canada, some people still think their symptoms are caused by Lyme, and they read on the Internet that these specialty labs are better,” said Gregson. “But they’re not better at picking up Lyme, and are actually producing more false-positive results.”

Well, I´m convinced! What brilliant logic! What command of the facts!

Idiots.
 

msf

Senior Member
Messages
3,650
Ok, maybe they´re not idiots, maybe they just think patients are idiots and won´t be able to understand a proper explanation.
 

msf

Senior Member
Messages
3,650
The fact that these commentaries are often behind paywalls just furthers the impression that they aren´t actually interested in persuading patients, only other doctors.
 

msf

Senior Member
Messages
3,650
Ok, he tries to explain his position in the article, but as usual it is both illogical and dishonest: “They’re trying to increase their ability to pick up infections by reducing the number of bands required to call positive with the western blot. But that’s not proven to be an effective way to do things. All that does is increase the false-positive rate.”

It´s not proven because there is no gold standard for chronic lyme, which means that we don´t know that whether it´s true that all it does is increase the false-positive rate. If you think about these things logically, it will increase the sensitivity while potentially lowering the specificity, just as doing away with the ELISA portion of the two-tier test will.
 

wdb

Senior Member
Messages
1,392
Location
London
Another report here (with video):
http://calgaryherald.com/news/local...lse-positives-in-u-s-testing-for-lyme-disease

Recent research has found the false positives occur at three of four commercial labs, with a rate of more than 50 per cent at one lab.

“Those laboratories are no better than standard laboratories,” said Gregson, noting they use only a single test such as the Western blot test, which relies on non-evidence based interpretation and can produce a false positive.

Gregson said it can lead to a multitude of problems for the patient.

“It’s giving them false hope,” he said, adding the misdiagnosis can also lead to treatment for the wrong infection that can lead to harmful side-effects.
 
Last edited:

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK

Nice find. I note the brief bit from Sarah Hutchison:

In recent years, people experiencing joint pain, fatigue and mental fog have started turning to commercial laboratories in the United States to test for Lyme disease.

Sarah Hutchison, a Canmore resident who is recovering from Lyme disease, said she was tested in the United States after four years of going undiagnosed for severe neurological pain and sensitivity to stimulation.

“I’m not a doctor so I am just going on what I experienced,” she said Monday in response to the commentary. “To my knowledge, the test in Canada has the opposite problem. They are missing cases.”

She has a blog that looks like it might be well worth a read: https://foxnsox.wordpress.com/about/
 

duncan

Senior Member
Messages
2,240
The number of positives, even with the absurd thresholds embraced in North America and the UK, is rising, and worse for some of these hill people, is that the number of positives post-conventional-treatment is also likely rising.

I suspect the new Guidelines will try to deflate further the import of securing a positive, even on the 2T.
 
Messages
13,774
Was there any new evidence provided in any of these reports? Any more results for the assessment of different tests? Or is it just comment?

Ok, he tries to explain his position in the article, but as usual it is both illogical and dishonest: “They’re trying to increase their ability to pick up infections by reducing the number of bands required to call positive with the western blot. But that’s not proven to be an effective way to do things. All that does is increase the false-positive rate.”

It´s not proven because there is no gold standard for chronic lyme, which means that we don´t know that whether it´s true that all it does is increase the false-positive rate. If you think about these things logically, it will increase the sensitivity while potentially lowering the specificity, just as doing away with the ELISA portion of the two-tier test will.

Without being able to say for certain who has Lyme and who does not you can still test for internal consistency and then build up from there. When good research is conducted it lets things move beyond a mere difference of opinion. eg: IgeneX's urine test for Lyme was assessed under blinded conditions and found to be totally unreliable.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
IgeneX's urine test for Lyme was assessed under blinded conditions and found to be totally unreliable.
It was a first generation test. It hasn't been in use since 2001.

Science progresses. Would you judge a first grader under the same standards as a college student? No, because it would be absurd not to expect that one would learn something new in 15 years.

It's totally illogical to keep bringing up a test that has been out of date for literally decades.
 
Messages
13,774
It was a first generation test. It hasn't been in use since 2001.

Science progresses. Would you judge a first grader under the same standards as a college student? No, because it would be absurd not to expect that one would learn something new in 15 years.

It's totally illogical to keep bringing up a test that has been out of date for literally decades.

Sometimes science progresses, but when it does, there should be good evidence to show that this is the case.

I'd judge a lab by the most rigorous and recent assessment of it's testing available. I would be good if IgeneX had tried to show that it's testing was of value, and provided the evidence needed to let patients make informed judgements about whether it was worth paying for their tests, but all we have is this old assessment of their urine test which showed it to be unreliable.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
“After getting a negative test in Canada, some people still think their symptoms are caused by Lyme, and they read on the Internet that these specialty labs are better,” said Gregson. “But they’re not better at picking up Lyme, and are actually producing more false-positive results.”

If you eliminate the five cross reactive antibodies insisted upon by the CDC and only consider the Bb specific antibodies, there cannot be a false positive on the Western blot (assuming no contamination or handling problems which is why we have CLIA certification).

So, 0% false positives...or 70% or more false negatives leading to a lifetime of suffering and ultimately death for an affected, unknowing patient. Seems like an easy choice to me.

I wish their noses would grow when making these kinds of ridiculous reports.
 
Messages
13,774
Then Labcorp and Quest should be held to this same standard as well.

It's unfair to keep singling out IgeneX for special, onerous requirements.

Yes, although a lab just presenting evidence that it is able to replicate the testing of others is unlikely to be of much interest to journals. Labs who are generating results which are the same as other labs using testing which has shown itself to be of some value should conduct assessments to show that their processes are reliable, but journals are unlikely to be interested in publishing that sort of thing. Labs whose results are divergent from current 'mainstream' tests, but who believe that their testing is more reliable should also conduct assessments which allow them to support their claims, and their would also be interest in publishing these results.

Labs which are claiming to have made breakthroughs in the development of reliable testing do have more of a responsibility to present evidence to support their claims than those labs who are merely claiming that they are able to conduct testing which has already been shown to be of some value by others.

If it isn't progressing, it isn't science, it's business or government.

What most people think of as 'science' does not always progress, and can make mistakes, mislead and encourage the mistreatment of people. I'm not sure what you mean by 'science'.

Great. Then we can all agree that the mainstream testing is just as useless as the alternative ones :thumbsup:

I'm not aware of any good evidence that this is true. It would be good to have some more evidence here, but there is evidence that 'mainstream' testing is of some value, while there is no evidence that 'alternative' testing is of any value.
 
Messages
15,786
I'm not aware of any good evidence that this is true. It would be good to have some more evidence here, but there is evidence that 'mainstream' testing is of some value. . . .
No, there isn't.

. . . while there is no evidence that 'alternative' testing is of any value.
Yes, there is. The paper regarding the LTT Elispot has been shown to you repeatedly. But you insist that researchers MUST engage in blinding themselves even when there is no risk of non-deliberate bias, so nothing will convince you.

But perhaps you can explain to me the usefulness of blinding, when bias by the patients is not a factor and unconscious bias by researchers is also not possible? Frankly you just seem to have created a ridiculous standard so that you can continue to adamantly maintain that you are right. That is not conducive to any discussion.
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Labs which are claiming to have made breakthroughs in the development of reliable testing do have more of a responsibility to present evidence to support their claims than those labs who are merely claiming that they are able to conduct testing which has already been shown to be of some value by others.
Except that they're doing the SAME testing as the other labs. The reason they are more reliable is because they use more strains of Bb and better gel materials to conduct their testing - not because of inherent differences in testing methodology.

They also provide a more logical assessment of the results than the CDC's interpretation which was never meant to be used for diagnostic purposes.

I'm not sure what you mean by 'science'.

Well, OK, I'll define science for you, if necessary.

Science is a system of acquiring knowledge in a systematic and organized way using the scientific method. Wikipedia defines the scientific method as "a body of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry is commonly based on empirical or measurable evidence subject to specific principles of reasoning." (emphasis mine)

I'm not aware of any good evidence that this is true. It would be good to have some more evidence here, but there is evidence that 'mainstream' testing is of some value, while there is no evidence that 'alternative' testing is of any value.

IT'S THE SAME TEST!!! So if you say "mainstream" testing has some value, then the testing done by IgeneX has that same value plus the value they add by increasing the number of strains and the quality of the testing materials.
 
Messages
13,774
Yes, there is. The paper regarding the LTT Elispot has been shown to you repeatedly. But you insist that researchers MUST engage in blinding themselves even when there is no risk of non-deliberate bias, so nothing will convince you.

But perhaps you can explain to me the usefulness of blinding, when bias by the patients is not a factor and unconscious bias by researchers is also not possible? Frankly you just seem to have created a ridiculous standard so that you can continue to adamantly maintain that you are right. That is not conducive to any discussion.

I don't think that blinding needs to be the be all and end all, but I do think it's useful for helping avoid unforseen problems with things like how samples are stored and treated, over-enthusiastic pursuit of a hypothesis, etc. Blinding as early as possible in the process lets us worry less about the specifics of the process and I don't see why one would not do it as a part of one's assessment procedure. I can't remember the details of the paper on the LTT Elispot which you cited, but I think it was the one that Jonathan Edwards was not impressed by either. I'm afraid that I really can't remember if we have any evidence on the Elispot's results either, eg: are a significant percentage of people with CFS symptoms getting positive results on Elispot but not mainstream testing?

I'm sure that at some point their will be good evidence for a new and improved way of testing for Lyme. I am not insisting that this will not happen, or that emergence of this evidence would mean that I was wrong about something, I'm just saying that when this claim is made it should be supported by good quality evidence.

Except that they're doing the SAME testing as the other labs. The reason they are more reliable is because they use more strains of Bb and better gel materials to conduct their testing - not because of inherent differences in testing methodology.

They also provide a more logical assessment of the results than the CDC's interpretation which was never meant to be used for diagnostic purposes.

Right, but they're not just trying to produce the same results as other labs. In that way they are attempting to produce different results which they claim are most useful and reliable. I thin that they should produce evidence to support their claim.

IT'S THE SAME TEST!!! So if you say "mainstream" testing has some value, then the testing done by IgeneX has that same value plus the value they add by increasing the number of strains and the quality of the testing materials.

If it's producing different results, it's not the same test. Increasing the numbers of strains and changing the testing materials should be assumed to lead to a more useful test if we do not have evidence that this is the case.

Well, OK, I'll define science for you, if necessary.

Science is a system of acquiring knowledge in a systematic and organized way using the scientific method. Wikipedia defines the scientific method as "a body of techniques for investigating phenomena, acquiring new knowledge, or correcting and integrating previous knowledge. To be termed scientific, a method of inquiry is commonly based on empirical or measurable evidence subject to specific principles of reasoning." (emphasis mine)

So then it has nothing to do with any assumption that IgeneX's test is more reliable than it was in 2001?

You seemed to imply it did, and so I assumed you were referring to 'science' as something other than an abstract process.

It was a first generation test. It hasn't been in use since 2001.

Science progresses.
What is claimed to be, and commonly thought to be, 'science' does not always progress, and can make mistakes, mislead and encourage the mistreatment of people.[/QUOTE]