CMAJ questions reliability of lyme testing

[Ema]

If it's producing different results, it's not the same test.

Western blot = Western blot no matter who does it.

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

Right. And then it's not properly called science anymore which was exactly my point in the first place

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

They don't do this test anymore so I don't refer to it because it is completely and utterly irrelevant to the testing they do today.

There are lots of tests that aren't done anymore because science. My point is that is part of the process for everyone, not just IgeneX or any other individual lab.

 

[duncan]

@Esther12 , if someone is going to preach safe sex, it's probably ill-advised to hold up the porn industry as the standard setters - even though they also advocate safe sex.

 

[Esther12]

Western blot = Western blot no matter who does it.

But 'western blot' as a category, is not particularly important here as it can refer to testing which is conducted in different ways and produces different results. If it's producing different results, it's not the same test.

Right. And then it's not properly called science anymore which was exactly my point in the first place

They don't do this test anymore so I don't refer to it because it is completely and utterly irrelevant to the testing they do today.

There are lots of tests that aren't done anymore because science. My point is that is part of the process for everyone, not just IgeneX or any other individual lab.[/QUOTE]

To be termed scientific, a method of inquiry is commonly based on empirical or measurable evidence subject to specific principles of reasoning.

What empirical and measurable evidence is there that the urine test from IgeneX is now any more reliable than the one which was shown to be totally unreliable and yet was being sold to patients? What empirical and measurable evidence is there that any of the testing available from IgeneX is of value?

 

[Ema]

What empirical and measurable evidence is there that any of the testing available from IgeneX is of value?

Some people will say that there is no evidence of value and will choose not to partake in such testing.

But the point remains that this is true of all testing from all labs. We use testing to support clinical findings (or at least the good doctors do) and not the other way around.

You're making demands of testing that no one can meet and thus rendering it all useless. I think most of us would agree that testing does have use in the appropriate context and would thus not throw the baby out with the bathwater.

FWIW, I think that the urine testing is a pretty crap way of testing for Lyme because it still comes up with a lot of false negatives. But it's a direct test...if it does happen to come up positive, you've got the bugs, little doubt about it.

 

[msf]

Sorry, I would love to contribute to the discussion, but I still have PEM from the last one.

 

[Esther12]

Some people will say that there is no evidence of value and will choose not to partake in such testing.

I'm more interested in the evidence than in just what people will say. What empirical and measurable evidence is there that any of the testing available from IgeneX is of value?

FWIW, I think that the urine testing is a pretty crap way of testing for Lyme because it still comes up with a lot of false negatives. But it's a direct test...if it does happen to come up positive, you've got the bugs, little doubt about it.

When the IgeneX test was assessed under blinded conditions it was shown to be completely unreliable and I am not aware of any evidence which shows that a positive Lyme urine test does show that one is truly positive.

But the point remains that this is true of all testing from all labs. We use testing to support clinical findings (or at least the good doctors do) and not the other way around.

You're making demands of testing that no one can meet and thus rendering it all useless. I think most of us would agree that testing does have use in the appropriate context and would thus not throw the baby out with the bathwater.

Lots of testing has shown that it is reliable under blinded conditions, and that positive results are strongly associated with particular health problems. I'm making demands of testing that all valuable testing will be able to meet, and that lots does meet.

 

[sarah darwins]

My apologies for triggering the Battle of the Western Blot: The Sequel. It wasn't my intention, important as all this stuff is.

I was at least as interested in the political and social dimensions of that article in the Chronicle Herald, and of the comments by Dr.Gregson, some of which I found rather strange. This one, especially:

“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.’”

"People are just looking for a cause for their symptoms" ???

Honestly, these sick people trying to find out what's wrong with them! And having the nerve to read things on the internet in an attempt to discover what they're obviously not getting from the health system of which Dr.Gregson is a part. Why else would they be doing it?

There does seem to be this defensive attitude within national healthcare systems whenever patients dare to step outside them. We get exactly the same thing in the UK.

Personally, I'm rather glad that the internet is bringing something of a new world order in which we're no longer confined to the healthcare system into which we're born, and in which there is — or should be — free exchange of significant health information across national borders and available to all. Then again, 'free' is rather a loose term for the way medical information is made available online.

Dr.Gregson and his department at the University of Calgary appear to do some very important work. Be nice if more of us could read about it.

 

[Ema]

When the IgeneX test was assessed under blinded conditions it was shown to be completely unreliable and I am not aware of any evidence which shows that a positive Lyme urine test does show that one is truly positive

There are plenty of studies on PubMed showing Lyme antigens are shed in mammalian urine. This is hardly a contentious topic.

Here's but one:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC269963/

I'm making demands of testing that all valuable testing will be able to meet, and that lots does meet.

And that lots don't meet...yet are still valuable for what they are. You're the only one insisting on perfection from your laboratory testing - and that's fine for you. But the rest of us live in the real world where things aren't so black and white.

This is why we are treated by doctors and not by computers.

 

[Ema]

There does seem to be this defensive attitude within national healthcare systems whenever patients dare to step outside them.

It's not limited to national healthcare systems unfortunately. It's rife within the US system as well...

The first response to something novel should be "That's interesting! Let me explore...". Unfortunately for most doctors it's a defensive "NO!" instead, like their whole world will come crashing down if they admit they don't always have the right answer.

Maybe med school should spend more time on the benefits of creative thinking rather than developing the God complex.

 

[Esther12]

There are plenty of studies on PubMed showing Lyme antigens are shed in mammalian urine. This is hardly a contentious topic.

Here's but one:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC269963/

That doesn't do anything to provide evidence which shows that any particular positive Lyme urine test does show that one is truly positive. Indeed, that paper came out before blinded assessment showed that IgeneX's urine test was totally unreliable.

And that lots don't meet...yet are still valuable for what they are. You're the only one insisting on perfection from your laboratory testing - and that's fine for you. But the rest of us live in the real world where things aren't so black and white.

This is why we are treated by doctors and not by computers.

No, I'm not insisting on perfection at all. I'm saying that there should be some good evidence that the test is of some value when it is being sold to patients. Testing which is far from perfect and led to lots of false positives and negatives could still show itself to be of some value in a properly conducted assessment. I am not complaining that the alternative Lyme testing which has been used to claim so many patients with CFS-like symptoms as having Lyme is not good enough, I'm complaining that there's no good evidence that it's of any value.

My apologies for triggering the Battle of the Western Blot: The Sequel. It wasn't my intention, important as all this stuff is.

It wasn't my intention either, I was just interested in whether any new data had been released so thought I'd ask.

I was at least as interested in the political and social dimensions of that article in the Chronicle Herald, and of the comments by Dr.Gregson, some of which I found rather strange. This one, especially:

“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.’”

"People are just looking for a cause for their symptoms" ???

Honestly, these sick people trying to find out what's wrong with them! And having the nerve to read things on the internet in an attempt to discover what they're obviously not getting from the health system of which Dr.Gregson is a part. Why else would they be doing it?

I could be wrong, but I took "People are just looking for a cause for their symptoms" to mean "it's perfectly understandable that people would want to find the cause for their symptoms".

It would be good if more of this stuff was open access.