Lyme testing

[Esther12]

I know that the quackery around CFS makes things difficult, and how it can be that having a diagnosis like Chronic Lyme can serve to make an unreasonable society treat one better, but that doesn't mean that my pointing out that there is no evidence to support the validity of 'alternative' Lyme testing is in any way disparaging to you as an individual. I certainly do not mean it to be, and if we were speaking face to face I am sure that I could easily make that clear to you.

There really isn't any good evidence for the validity of this testing though, and this is a problem that all patients considering paying for this testing should be made aware of. CLIA certification does not require that labs provide evidence of the validity or reliability of the individual tests which they provide.

There is a possibility that even dodgy testing can serve to provide false explanations that make it easier for patients to interact with an unreasonable society, and that openly and publicly criticising these tests could make life worse for some patients. I think that in the long-run it's always best for us to try to be as honest and clear with one another as is possible though.

Throughout this discussion I've always thought of you, and responded to you, as an equal, and as another patient who is interested in the truth. By looking carefully at the evidence, I think that we can help one another be more reasonable. If you are aware of any good evidence to support the 'alternative' Lyme claims, then let us know what it is. If you don't think that there is good evidence for these claims, but want to give alternative Lyme treatment a go anyway, because you don't think it's much of a risk, then that's your decision, but I do think that it's important to try to be clear when talking about this that there really is no good evidence to support the alternative Lyme theories, or it could end up leading other people astray. Some people do seem to think that the alternative Lyme approaches are supported by good scientific evidence, and this can mean that they make decisions which they come to regret, or would not have made had they been properly informed.

A real problem I have with the biopsychosocial approaches that were promoted to me was the disinterest in informed consent, the exaggerated claims about the evidence, and the false reassurances that were given. I think that this was really quite nasty quackery. It has left me really committed to the notion that patients should be properly informed before they undertake any medical intervention.

(Sorry if this was a bit rambling).

 

[Ema]

I know that the quackery around CFS makes things difficult, and how it can be that having a diagnosis like Chronic Lyme can serve to make an unreasonable society treat one better, but that doesn't mean that my pointing out that there is no evidence to support the validity of 'alternative' Lyme testing is in any way disparaging to you as an individual. I certainly do not mean it to be, and if we were speaking face to face I am sure that I could easily make that clear to you.

There really isn't any good evidence for the validity of this testing though, and this is a problem that all patients considering paying for this testing should be made aware of. CLIA certification does not require that labs provide evidence of the validity or reliability of the individual tests which they provide.

There is a possibility that even dodgy testing can serve to provide false explanations that make it easier for patients to interact with an unreasonable society, and that openly and publicly criticising these tests could make life worse for some patients. I think that in the long-run it's always best for us to try to be as honest and clear with one another as is possible though.

Throughout this discussion I've always thought of you, and responded to you, as an equal, and as another patient who is interested in the truth. By looking carefully at the evidence, I think that we can help one another be more reasonable. If you are aware of any good evidence to support the 'alternative' Lyme claims, then let us know what it is. If you don't think that there is good evidence for these claims, but want to give alternative Lyme treatment a go anyway, because you don't think it's much of a risk, then that's your decision, but I do think that it's important to try to be clear when talking about this that there really is no good evidence to support the alternative Lyme theories, or it could end up leading other people astray. Some people do seem to think that the alternative Lyme approaches are supported by good scientific evidence, and this can mean that they make decisions which they come to regret, or would not have made had they been properly informed.

A real problem I have with the biopsychosocial approaches that were promoted to me was the disinterest in informed consent, the exaggerated claims about the evidence, and the false reassurances that were given. I think that this was really quite nasty quackery. It has left me really committed to the notion that patients should be properly informed before they undertake any medical intervention.

(Sorry if this was a bit rambling).

Calling Lyme testing repeatedly quackery is disparaging. Calling my fully board certified doctor a quack is disparaging. Calling a fully certified lab dodgy is disparaging. Talking about Lyme like some silly fad is disparaging an illness that causes severe devastation to the lives of others.

I'm all for giving this thread a rest though. I think the facts speak for themselves.

I had written a reply that was deleted explaining that I don't take any of this personally. When a differing viewpoint is likely in my opinion to cause harm to other's life or liberty, I do feel a moral imperative to speak up strongly. Not all differing viewpoints are benign points for debate.

 

[Esther12]

I've not said that all Lyme testing is quackery, or talked about Lyme like some silly fad. I think that Lyme can be a very serious and debilitating illness, and that a lot of the people who have suffered from it, and been harmed by it, have been poorly treated; and I have already said so in this thread. The idea that I am disparaging Lyme as an illness is so ridiculous that I am not even insulted by it.

I do not even know who your doctor is, never mind having called them a quack, however I certainly do think that there are many board certified doctors who are quacks. Also, I do think that it is dodgy to sell tests that do not have evidence of their validity.

You should speak up if you are aware of good evidence of the validity of alternative Lyme testing, or to support the alternative Lyme theories that have been floating about for the last couple of decades. We all have a moral imperative to pursue truth, and look carefully at the evidence.

barbc56 Occasionally seems to pop in for a post, only for it to disappear. Hi Barb! Bye Barb,

 

[barbc56]

I was moderated. Probably for the better, descretion being the better part and all. I am also on my cheapie tablet which makes it hard to type and have occasionally deleted a post if I go back to edit to correct the typlng. I don't know how the youngun's can use these things for typing. So back to my laptop tomorrow!
Hi and bye.

 

[Ema]

I have spoken up.

Since nothing new has been added to this thread in quite some time, I suggest we let it speak for itself at this point.

 

[roxie60]

Not sure this is the right thread orif it has been posted before but here is yhe movie made about Lyme called Under Our Skin. I watched it now tired but want others who wonder if they have lyme to have the info.

 

[Esther12]

Before people start making decisions about what testing or treatments they want to pursue, I think it's important to try to look seriously and critically at the available evidence. There will always be anecdotes which can be selected to support a particular narrative, but we have seen that harm that can be done when this is allowed to affect people's view of reality.

Around 18:00 in 'Under our Skin' the research who is arguing against the 'mainstream' view says that he is working hard to find evidence which will support his theories, and that time will tell. We are still waiting, and it is important that people realise this is the case, rather than slipping into believe that there is compelling evidence available that supports the 'alternative' views around Lyme.

(I'm slightly uncomfortable with the 'mainstream' and 'alternative' labelling here, as there have certainly been serious problems with how 'mainstream' medicine has responded to Lyme in the past, but as we're now on page 7, hopefully people will understand what I mean without my needing to go into more detail).

 

[sianrecovery]

Watchful waiting until solid gold diagnostics arrive on the scene is fine if that's what you want to do. Unless of course you are in a steep decline, in severe pain, losing sight etc. Lyme presentations are not always synonymous with what we classically think of as ME. The urgency to act can be based on very clear clinical urgency in the symptoms shown. I understand your dislike of charlatans Ester, and they are legion, but in terms of my life and the risks I take to be able to live it, you can consider your point made.

 

[Esther12]

Everyone should be free to make their own decisions about these things. I understand that desperation that serious ill health can lead to, but there are a lot of potential salvations on offer that have no good evidence to support them, and nearly all of them will do more harm than good. Best of luck to everyone, whatever you all decide to do.

 

[Ema]

Everyone should be free to make their own decisions about these things. I understand that desperation that serious ill health can lead to, but there are a lot of potential salvations on offer that have no good evidence to support them, and nearly all of them will do more harm than good. Best of luck to everyone, whatever you all decide to do.

That's why testing is just ONE part of the picture.

Leaving out solid clinical judgment while waiting for non-biased perfectly objective double blinded randomized studies throws the baby out with the bathwater.

There's no need to marginalize Lyme when the testing faces exactly the same limitations as for ME/CFS, MS, lupus, fibromyalgia, Parkinson's etc etc. We haven't cured much in modern medicine in these realms unfortunately. That's just not the current model though there is always hope for change.

We agree that there should be better testing and studies for all illnesses and we agree that everyone should be free to make their own decisions. Perhaps that is as good as this thread is going to get.

 

[Esther12]

The current 'alternative' testing for Lyme is unusual, as there is no evidence that it is of any value for diagnosing Lyme. By comparison, the current blood tests for Lupus have evidence which demonstrates their sensitivity and specificity for the diagnosis of Lupus. We do not have perfect testing for many diagnoses, but still, there is evidence showing that the testing used is of some value. For the alternative Lyme tests, we lack even that.

Also, how do you assess whether someone's clinical judgement is solid? To me, the use of tests which lack any evidence of value throws into question the clinician's judgement. Other's may choose to disagree, but I think that it is a bad idea to just trust a doctor's opinion if it is not supported by good evidence.

 

[vamah]

The current 'alternative' testing for Lyme is unusual, as there is no evidence that it is of any value for diagnosing Lyme. By comparison, the current blood tests for Lupus have evidence which demonstrates their sensitivity and specificity for the diagnosis of Lupus. We do not have perfect testing for many diagnoses, but still, there is evidence showing that the testing used is of some value. For the alternative Lyme tests, we lack even that.

Also, how do you assess whether someone's clinical judgement is solid? To me, the use of tests which lack any evidence of value throws into question the clinician's judgement. Other's may choose to disagree, but I think that it is a bad idea to just trust a doctor's opinion if it is not supported by good evidence.

To be fair, though, I have been in plenty of situations where it was a bad idea to trust a doctor's opinion even when it was supported by evidence.

 

[Ema]

The current 'alternative' testing for Lyme is unusual, as there is no evidence that it is of any value for diagnosing Lyme. By comparison, the current blood tests for Lupus have evidence which demonstrates their sensitivity and specificity for the diagnosis of Lupus. We do not have perfect testing for many diagnoses, but still, there is evidence showing that the testing used is of some value. For the alternative Lyme tests, we lack even that.

Also, how do you assess whether someone's clinical judgement is solid? To me, the use of tests which lack any evidence of value throws into question the clinician's judgement. Other's may choose to disagree, but I think that it is a bad idea to just trust a doctor's opinion if it is not supported by good evidence.

That is just not true. A Western Blot is a commonly used test. It is hardly some bizarre random unproven test.

You can have lupus and test negative. It is still primarily a clinical judgment as well with testing as but one part of the picture.

Someone who has spent time researching the disease, the testing, and the limitations of such and can speak coherently about risks and benefits and costs to both body and pocketbook generally has clinical judgment.

 

[Esther12]

To be fair, though, I have been in plenty of situations where it was a bad idea to trust a doctor's opinion even when it was supported by evidence.

We could mean slightly different thing by 'supported by the evidence' or 'trust'. The more I read about medicine, the less I think it is sensible to trust anyone's personal opinion!

That is just not true. A Western Blot is a commonly used test. It is hardly some bizarre random unproven test.

You can have lupus and test negative. It is still primarily a clinical judgment as well with testing as but one part of the picture.

Someone who has spent time researching the disease, the testing, and the limitations of such and can speak coherently about risks and benefits and costs to both body and pocketbook generally has clinical judgment.

Sure, the western blot is used as a part of 'mainstream' testing for Lyme. I'm not arguing that there is no Lyme testing that has evidence of it's value. Also, a bullseye rash after a tick bite is a useful clinical sign for early in an infection, when testing is less reliable. But in all these other cases there is still good positive evidence that the testing being used is of some value, and that evidence is lacking for the 'alternative' Lyme tests.

 

[Ema]

We could mean slightly different thing by 'supported by the evidence' or 'trust'. The more I read about medicine, the less I think it is sensible to trust anyone's personal opinion!



Sure, the western blot is used as a part of 'mainstream' testing for Lyme. I'm not arguing that there is no Lyme testing that has evidence of it's value. Also, a bullseye rash after a tick bite is a useful clinical sign for early in an infection, when testing is less reliable. But in all these other cases there is still good positive evidence that the testing being used is of some value, and that evidence is lacking for the 'alternative' Lyme tests.

Actually, the rash is not required for a Lyme diagnosis. It only appears in about 50% of cases. When it does appear though, it is definitive.

The Infectolab test cultures Lyme bacteria directly from the blood. There isn't much room for interpretation there either. KDM is using this testing quite a lot recently. I think pretty highly of his clinical judgment even though I am not a patient.

The most commonly done tests in the US though are still the Western Blots. If you read up thread, I discussed why Igenex is better than other labs in this regard.

 

[Esther12]

I didn't say that a rash was required, I said that it was a useful clinical sign for the period when blood tests are less reliable.

You didn't point to any evidence that the additional testing done by Igenex was of any value.

I can't remember the specific details of the different alternative tests available, but all of them were lacking in evidence of their value, and none of them provided evidence to support the claim that a significant number of people's health problems could be better understood thanks to the results from alternative Lyme testing.

I just quickly googled to see if there was any evidence as to the validity of the culture testing, and found these articles from this year which could be of interest. I don't know the specific papers being referred to:

Bolek said, "LDTs refer to in vitro diagnostics that are manufactured by and offered in the same laboratory." The Advanced Laboratory Services Lyme culture is in this category because, although patient blood samples may come from other states, all analysis is done at the Advanced Laboratory Services facility in Pennsylvania.

Bolek added, "Since the implementation of the 1976 Medical Device Amendments, the FDA has generally exercised its enforcement discretion and not enforced regulations that apply to LDTs. Initially, the FDA viewed LDTs as relatively simple, well-understood tests that diagnosed rare diseases and conditions and that were intended to be used by physicians and pathologists in a single institution, where they were actively involved in patient care.... These tests are [now] often performed in commercial laboratory settings that are geographically separate from the patient's primary healthcare professionals and their healthcare setting. These tests, which are becoming more complex and high risk, are playing an increasingly important role in clinical decision-making. As a result, LDTs that have not been properly validated put patients at risk, such as for missed diagnosis, wrong diagnosis, and failure to receive appropriate treatment."

Bolek told Medscape Medical News that the FDA believes that a risk-based approach to regulating LDTs is appropriate and that the agency is currently working on new guidance for regulating such tests.

http://webcache.googleusercontent.c...82+&cd=2&hl=en&ct=clnk&gl=uk&client=firefox-a

Eighty percent of the patient samples used to demonstrate a novel method of culturing Lyme disease spirochetes from serum contained gene sequences identical to those found in laboratory strains used to develop the test and were likely false positives, Centers for Disease Control and Prevention (CDC) researchers report in an article published online August 14 in the Journal of Clinical Microbiology.

"Taken together, our data and those of Sapi et al. indicate that laboratory contamination was the probable source of the borrelial DNA found in the patient samples. The vast majority of patient pyrG sequences (41/51) are indistinguishable from laboratory strains used by the investigators. The clinical relevance of the other pyrG sequences (10/51) is unclear; these findings also may be consistent with laboratory contamination," the authors write.

The CDC researchers warned that independent verification is critical for novel findings that contradict a large body of previous work and for tests that might lead to unnecessary antibiotic treatment.

http://webcache.googleusercontent.c...26+&cd=1&hl=en&ct=clnk&gl=uk&client=firefox-a

It looks like they found evidence of the sort of problems which led to inaccurate XMRV results.

 

[Ema]

Until the CDC revises it's position on Lyme and amends their criteria to actually be used for diagnostics, I wouldn't trust one word written by them. They are not objective at this point unfortunately with Lyme any more than ME/CFS.

There are plenty of people out there vehemently denying Lyme, sure. It doesn't make them right any more than the CBT people were right about ME/CFS.

I've never had or researched the Advanced Laboratory Services testing so I won't comment on it other than to say that the posted link is quite one sided.

The ALS website says this and I look forward to their rebuttal.


"Advanced Laboratory Services is aware of the publication of the following article: Johnson BJ, Pilgard MA, Russell TM. Assessment of New Culture Method to Detect Borrelia species in Serum of Lyme Disease Patients. J Clin Microbiol. 2013 Aug 14. We intend to respond directly to the authors of that article and/or the journal concerning the findings in the article. We have no further comment and no one is authorized to comment on our behalf."

 

[Esther12]

I'm not arguing for deference to the CDC or anyone else. We should push anyone claiming expertise to provide evidence which supports their opinions. For those promoting 'alternative' Lyme testing as providing more useful information than 'mainstream' testing, or claiming that these tests can help explain and treat people's health problems, we are still waiting for any supporting evidence. It is pure faith at the moment, and that is dodgy.

 

[roxie60]

An article discussing various Lyme tests - for those still looking for testing options. Author also shares personal 'opinion' about each test.

http://www.betterhealthguy.com/lyme/testing

 

[beaverfury]

I'm not arguing for deference to the CDC or anyone else. We should push anyone claiming expertise to provide evidence which supports their opinions. For those promoting 'alternative' Lyme testing as providing more useful information than 'mainstream' testing, or claiming that these tests can help explain and treat people's health problems, we are still waiting for any supporting evidence. It is pure faith at the moment, and that is dodgy.

Ok... Caveat Emptor.

Be wary of alternative lyme tests. ( Insert your definition of alternative here....!)

But if you're presenting with lyme symptoms, for God's sake, get two tiered Western Immunoblot/ Elisa tested.
Not for absolute proof, but to give your doctor some additional clues for diagnosis.

Lyme is a clinical diagnosis. As far as i'm aware so is Alzheimers, Parkinsons and Multiple Sclerosis.
I haven't heard of a test that will definitively diagnose these illnesses. Other than autopsy.