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Lyme testing - is there a Popular Lab?

Discussion in 'Lyme Disease and Co-Infections' started by end, Feb 24, 2014.

  1. Esther12

    Esther12 Senior Member

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    I said:

    You said:

    I had not singled out Dr Derham in the way that you indicated I had.


    Some of the mainstream testing for Lyme has been well validated. Nothing like that for ME/CFS though.


    How do you know that?

    So you read me telling someone how I would go about getting tested for Lyme, as my telling people that no Lyme testing should be done, or treatment undertaken?

    Could you look again? It seems that you've quite seriously misunderstood me.


    You never provided any evidence to support these claims.

    I hope this was motivated by a desire to inform patients, rather than protect doctors who were misleading patients.
  2. Ema

    Ema Senior Member

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    OK.

    When you tell people to get "mainstream testing" from a "conventional GP", you are, in effect, telling them to get unreliable testing (refer to Lyme Testing thread) from doctors who will then with almost 100% certainty disregard the unreliable results and, at best, provide ineffective treatments.

    It's like telling ME/CFS patients that you would only go to a mainstream GP and have conventional tests (that would likely all come back "normal") to diagnose ME/CFS. That doesn't work any better than it does for Lyme, despite the lack of "real" (by your definition) proof in either case.

    You might want to check out the article I just posted:

    http://www.ncbi.nlm.nih.gov/pubmed/23574108

    This means missed diagnoses, often for many years...and suffering of who knows how many patients.

    Lyme is NO different. Except that there are actually some better but not perfect tests available out there that can be used by knowledgeable specialists (who are not all shysters).

    All this causes more harm than good to patients.

    That may not be what you *mean* to write, but that is what you write *does* mean in real life.
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  3. Esther12

    Esther12 Senior Member

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    I'm not offering a broad defence of mainstream medicine, of which I'm often deeply critical. I am just saying that, when it comes to Lyme testing, one is best off going for mainstream testing that has good evidence of validity.

    I think it's a really ridiculous misrepresentation to present that as my saying "no Lyme testing should be done or treatment should be undertaken."

    You've not provided evidence that any of the alternative testing for Lyme is better than the mainstream testing.

    For about two decades now we've had alternative doctors claiming that a large percentage of people with ME/CFS-like symptoms were really suffering from Lyme, and that this could be shown with their alternative testing. If this were true, they could easily produce a ground-breaking study with good evidence showing that it were true. They haven't done so. When one of the alternative tests from IgeneX was tested under blinded conditions, it was found to be unreliable.

    There are problems with how mainstream medicine responds to Lyme, and post-Lyme whatever-they-call-it-now. There are even more serious problems with how mainstream medicine responds to CFS/ME... but the best response to this is to be more critically minded, more evidence based and more rigorous than the quacks in mainstream medicine. Not to reach out to even more dodgy stuff.
  4. Ema

    Ema Senior Member

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    Except it doesn't...

    There is *no* validity for the ELISA testing or the two tiered WB system, or the CDC definition...which is the whole point.

    The CDC doesn't even dispute it was never meant to be diagnostic and admits reasons for many shortcomings in their testing on their website.

    Please stop accusing me of not providing evidence when I have done so in the Lyme thread and asked you repeatedly to refer to it.

    Here are just a few points:

    Igenex tests for *more* Bb strains, uses a better gel medium, and reports their results with greater sensitivity (+, -, IND) than any other mainstream lab.

    I call that better testing than the mainstream by far just on those 3 points.

    PLEASE refer to the Lyme Testing thread.

    It is all laid out well there. People can read it and draw their own conclusions.

    Hmmm. Looks like they've been doing OK on their testing since the mid-90s...

    As far as the rest goes, that is a political issue, not a medical one, that cannot be solved by so called "evidence based medicine" which in and of itself is subject to a great deal of criticism for bias.

    I've said time and again what testing I'm referring to (though you keep bringing up other tests) and how ridiculous it is to assume that doctors and patients should pay for their own groundbreaking studies.

    And you keep bringing up *one* experimental test that is not approved in one state out of the whole of the USA. Having an experimental test is how science moves forward...since when is innovation dodgy?

    And we know how difficult it is to get studies funded anyway, much less ones where there is so much disagreement. Definition first, studies funded second. That's how it works in the real world.

    Again, we've debated these points ad nauseum on the Lyme Testing thread so there is no reason to do it here again now.

    In fact, these last few pages should probably just be moved there anyway as they aren't really on topic here anymore.

    Good thing no one is suggesting that then!

    I've told you about the *real life* consequences of your advice and how it will contribute to even more suffering for patients. If you want even more testimonials, I will provide those as well. But those are from real people again, not journals.

    You are clearly free to wait until the evidence meets your standards. I've never *once* said you should do anything different about the treatment you choose (or do not choose) for your illness.

    Whereas you have consistently (inferred and outright) criticized me for *my* treatment choices as being "dodgy" and not based in "real" science.

    Because most of mainstream medicine will tell you that there is no such thing as chronic EBV/CMV/HHV6 like Lerner, Montoya et al test and treat for either. Want to call them "dodgy" too?

    By your reasoning, I shouldn't have done cidofovir infusions either since there is no "real" evidence that they are useful for chronic viral infections in ME/CFS, right? Heck, at this point, there isn't even much "real" evidence for pathogens at all!

    So what do you suggest we do, besides sit around and criticize the best of what we *do* have and call the rest "dodgy" and "quackery"? Truly, I'd like to know because criticism just for the sake of criticism doesn't move us forward much.
    Valentijn likes this.
  5. Esther12

    Esther12 Senior Member

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    You seem to have quoted something from the IgeneX webstie, not the CDC website. Am I missing something?

    Where is the evidence that this allows for more accurate testing for Lyme? More numbers are not the same as better testing, particularly when there are reports of doctors going on to misinterpret these numbers.

    re the Lyme testing thread: I don't remember you posting any evidence to support your claims there either.


    So after saying how terribly mainstream testing is, and that my suggesting people use mainstream testing was akin to saying ""no Lyme testing should be done or treatment should be undertaken", you're now saying that they're much the same?

    Political matters can still be addressed through evidence based discussions, and I think that for many 'medical' matters, politics is of vital importance. When it comes to the debate around 'Chronic Lyme' I think that taking a broad perspective is helpful.

    You've made claims, but not provided any good reason to think that they are true.


    I don't know what your treatment choices are. They are totally up to you. It is entirely possible that you are making dodgy decisions not based on "real" science, but I'm much more interested in talking about the issues and evidence than any one persons' choices.


    I don't know much about Lerner, Montoya, etc. If they're behaving in the same way as some alternative Lyme specialists, then that would be dodgy. I've not said that individual patients should not do long-term antibiotics (I've no idea about cidofovir infusions) because I think that we all have different attitudes and preferences - individuals should be free to make their own decisions about their own lives.

    I think that we should criticise the more widespread forms of quackery around. Currently, this is the way in which CBT and GET are promoted for CFS. I think that criticism is helpful, and am hopeful that sustained, reasonable and informed criticism will help move medicine forward.

    In addition, I happen to have looked into the Lyme stuff, and found that a lot of the claims in this area are dodgy, so I want to make other patients aware of this, so that they can make their own informed decisions about their own lives, without being misled by some of the unfounded claims that there are in this area.
  6. Ema

    Ema Senior Member

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    Maybe it's all just a little more complicated than "dodgy"?

    Here's where the CDC first went wrong...

    http://www.lymeneteurope.org/info/laboratory-tests

    More smoke and mirrors...and strangely again, not from the Lyme literate doctors:

    http://canlyme.com/2014/01/21/why-is-the-cdc-trying-to-block-an-accurate-lyme-disease-test/

    ...

    ...

    Well, now THAT seems "dodgy" to totally mischaracterize a study?

    And finally, from a very well respected Lyme expert that has successfully treated thousands of patients:

    http://lymemd.blogspot.com/2009/01/lyme-and-cdc-tangled-web.html

    Kind of sounds like the CDC/IDSA doesn't understand immunology very well either. Do I need to post a textbook here to "prove" this point as well? It holds for chronic viral infections as well.

    I'm finding it very hard to take the CDC's word on ANYTHING Lyme related at this point. They clearly have an agenda and I believe it is spelled V-A-C-C-I-N-E development.

    Sounds like the Lyme "war" doesn't have much to do with testing at all...which doesn't mean I'm saying that the testing is all "dodgy" at all. I'm saying the same thing I've been saying all along. Lyme is a clinical diagnosis, the same as ME/CFS, and testing is just one part of the picture.

    But sure, let's attribute the 20 year delay in "real" studies to the "dodgy" tests and "quack" doctors. That makes much more sense for sure.
    Valentijn likes this.
  7. Esther12

    Esther12 Senior Member

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    I'm not sure what you were responding to with those blog posts. I do not have faith in the CDC or any other organisation. Neither am I particularly trusting of lymemd blog posts.

    Under less than ideal conditions, blinded study assessing the prevalence of lyme amongst those with CFS-like symptoms could be cheaply done by those providing alternative tests. They would just need blood samples from healthy controls, and a system for blinding. If they had a test which was positive very rarely for healthy controls, but very often for those with CFS-like symptoms, then that should be easy to show and would be a breakthrough with which they could easily attract funding for further research.

    The XMRV saga showed how messy science can be, but also showed how this sort of testing can and should be assessed.
  8. Ema

    Ema Senior Member

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    No, those were my words.

    I didn't say more numbers, I said more STRAINS and better sensitivity and testing materials.


    In your opinion.

    Because I haven't posted a double blinded study that doesn't exist and likely won't for another 20 years.

    And I admit that there is a political agenda at play here that is holding things up, not quacky doctors.

    Really?

    I've written at length about my Lyme treatment with antibiotics and viral treatment with antivirals.

    You don't have to write specifically, "Ema, your decision to follow the ILADS protocol is based on "dodgy" science and practiced by "quack" doctors and not backed up by any "real" science" for it to be a criticism of my treatment choices.

    Wow. Some of our best ME/CFS specialists are "dodgy". Wow.

    Because they sure as heck all work based on their clinical expertise and not simply on what they find in journal articles.

    Yes, you have, when you advocate following mainstream, conventional Lyme treatment currently sanctioned by the IDSA.

    That message is sure dying down fast too. I haven't heard anyone talk about CBT for CFS in ages...

    Constructive criticism, sure.

    Forward - OK, but at what snail's pace?

    That's why the clinical, anecdotal evidence has a place in "real" science too. Because that is where *most* of the real breakthroughs will occur.

    I'm all for informed choice. Not everyone will choose to test or treat Lyme. No biggie. But if they follow the CDC/IDSA, they will never actually *make* an informed choice.

    I've never contested any *true* unfounded claims you've made. I've never said Lyme testing is perfectly perfect. I've acknowledged the limitations fully.

    Going to a conventional doctor that simply denies Lyme won't get you any closer to a "real" or "true" diagnosis. And isn't getting the closest you can to a "true" diagnosis really the whole point?

    Or is it just to remain clueless and miserable until the "right" study is done?
  9. Ema

    Ema Senior Member

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    If you read what I posted, you will see that immunology testing for a bacteria such as Lyme is not that simple or cheap.

    The "easy" testing you describe would not work and the reasons are elucidated above and further in any immunology textbook you might wish to pick up.
  10. Esther12

    Esther12 Senior Member

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    But a blinded study could still be attached to their clinical work, with only the addition of healthy controls needed. To do it cheaply, I'm sure that it wouldn't be ideal, but they could still do a solid enough job to show that there was a good chance that their testing was an important breakthrough.

    However these additional results are expressed, there is still no evidence of it's value in accurately diagnosing Lyme.

    In your oppinion, what good evidence do you think that you have posted?


    I don't mean to seem dismissive, but I think it's fair for me to not be that interested in your individual choices. You've clearly made your decisions based upon assumptions that I do not think are right. Best of luck with everything, but it's just not information I would benefit from knowing. Regardless of your personal choices, I will still state my concerns about the way in which exaggerated and unfounded claims are too often made about the extent to which Lyme infection can help explain the symptoms for a high percentage of patients suffering from CFS-like symptoms.

    I don't think it's a good idea to take long-term antibiotics because one has been diagnosed as suffering from Lyme with an alternative test, but so long as patients are genuinely well informed about the available evidence, I don't have a problem with them deciding to pursue an intervention which is very unlikely to be helpful for them.


    There's a place for it. But it should lead on to properly conducted research, not decades of charging patients for testing and treatments that are supported only by anecdotal evidence.

    Why can no-one make an informed decision to follow the CDC guidelines on Lyme?

    I disagree with some of the other things you've said, but they may not be particualarly important.
  11. Ema

    Ema Senior Member

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    Showing the presence of additional strains of a type of a bacteria is always going to be more useful in diagnosis.

    If metaphor is useful:

    What if I was only testing for "golden retrievers" when I was testing for the prevalence of dogs? Would I get a reasonable approximation of dogs? Or wouldn't my results be better if I included more species?

    What if I was only counting the dogs using the view from my window? Wouldn't my results be better if I actually walked out the door and looked around the neighborhood?

    And finally, wouldn't there be some use in counting the dogs that I could see, but not clearly?

    All of those things would improve my study on the prevalence of dogs, and that is exactly what IgeneX has done with their Lyme testing and that is why it is better.

    My previous posts speak for themselves on the pros and cons of the Lyme testing and history of the politics behind a clinical Lyme diagnosis.

    No need to re-hash here; people can read.

    It's fair for you not to be interested. It's not fair to be dismissive and disparaging based on "opinions" that are defamatory towards fully certified and licensed doctors and labs.

    If I were the OCD type, I'd go back through this thread and others and count the multiple times you've written that you don't know much or haven't looked into something much, and yet still have a critical opinion to state based on your personal opinion.

    How does not knowing how *real* patients are treated in the *real* world based on the recommendations you've made to them not provide benefit and positively expand your world view?

    OK, I can agree with the first part of that - alternative tests are not good. But a simple Google search will show up which tests have fallen out of favor due to lack of reliability.

    But I'm not talking about alternative testing. I'm talking about testing that has been held to a more rigorous standard than the CDC testing and certified by CLIA and CMS.

    So I do think a therapeutic trial of antibiotics after proper testing with the best tests we have available and evaluation by an expert doctor specializing in the treatment of Lyme disease can be extremely valuable.

    I haven't seen any evidence showing it's unlikely to be helpful for people. I've seen exactly the opposite. And the difference is, I've actually *been* in that position. Can you say the same?

    Just like treatment by an ME/CFS specialist is useful much in the same manner. You kind of lost me when you called the methods of two of our top specialists "dodgy" as well (after you said you didn't know much about them either).

    Because the CDC guidelines were never meant to be diagnostic.

    ELISA/WB two tiered testing is not good enough, that's been proven beyond a shadow of a doubt.

    They miss half of all positive cases of Lyme (which has been well documented in the scientific literature).

    Which means 1 out of every 2 patients that will benefit from treatment will not get it if they follow the CDC/IDSA guidelines.

    That's what your advice means in the real world.

    [​IMG]

    And better tests exist...and should be used but aren't because of a political war.

    See more at: http://lymedisease.org/news/lymepol...he-new-culture-test.html#sthash.9dOM9JWC.dpuf

    The evidence for the limitations of the CDC definition are clear.

    The real world implications for patients suffering utilizing their guidelines is even clearer.

    In the words of Carl Sagan, "Science is a way of thinking much more than it is a body of knowledge".
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  12. Esther12

    Esther12 Senior Member

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    So shouldn't it be easy to generate data showing that it is better under blinded conditions?

    Yet they have not done that. The only data we could find testing IgeneX Lyme testing which was generating different results to mainstream testing also showed that the IgeneX testing was unreliable.

    Your metaphor started with the assumption that mainstream testing is the equivalent of examining the prevalence of dogs by only counting golden retrievers - there is no evidence to support this assumption.

    That's up to you, but I never saw any evidence which supported your claims.


    There are lots of specifics I do not know, and have not looked into, but there are lots of things that you do not need to know to still be able to safely conclude that a lot of the alternative lyme theories are dodgy. There was a lot that I did not understand about the specifics around XMRV testing, but when the testing did not hold up under blinded conditions, those specifics did not matter.

    You do not seem to be following my recommendations. Anyway, I'd prefer data from controlled studies.

    Where is the evidence that any of the non-mainstream testing is more accurate than the current mainstream testing?

    Certification does not require evaluation of clinical sensitivity and specificity.

    I've certainly seen people be misled by unreliable Lyme testing.

    I did not do this either. You keep putting words into my mouth. I really think that you owe me an apology after falsely claiming I told people "no Lyme testing should be done or treatment should be undertaken".


    I looked up the most recent paper cited (the Bacon et al) and found that the lack of sensitivity stemmed from testing people early in their infection. I've repeatedly said that at this stage of the illness, testing is not reliable. There is no evidence that alternative testing is more reliable though.

    This is from the paper:

    Also, that table doesn't include papers I found when looking into this, like this 2008 one: http://cid.oxfordjournals.org/content/47/2/188.full

    Or this from 2007: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1248466/?report=reader

    I don't want to stand up for any particular paper, but I do think it's important to recognise that, when testing techniques are coming up with fundamentally different results, as is the case for some mainstream vs alternative Lyme tests, these tests should be assessed under blinded conditions. When this has happened, IgeneX's was found to be unreliable. Furthermore, we've had two decades of doctors claiming that Lyme infections can explain the symptoms of a large percentage of patients with CFS-like symptoms, and that they have access to reliable tests which show this to be the case... we've still not have any good evidence to support the claim!

    I also think that there are problems with the way in which the CDC and 'mainstream' medicine has responded to Lyme disease, and the problems people can suffer after being treated with antibiotics, and there have certainly been problems with the way in which people suffering from CFS-like symptoms have been treated. In no way is my criticism of some of the unfounded claims made about alternative Lyme testing a criticism of patients who have been let down by mainstream medicine, and then ended up trusting alternative testing which lacks evidence of it's value. Just as I dislike unfounded reassurance about GET and CFS, I dislike unfounded reassurance about alternative Lyme testing. I think it's important that patients are able to trust their doctors, and all too often, they just cannot.
  13. Ema

    Ema Senior Member

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    Sure, if it wasn't an intracellular, pleomorphic infection that evades typical antibody responses, if no one had co-infections, and anyone could agree on a definition on which to fund such a study.

    Mainstream testing only tests for limited strains, like limited breeds. It's exactly the same thing.

    Mainstream testing tests for less than 1% of the known strains of the Bb bacteria.

    We have a fundamental difference in opinion on what constitutes "evidence".

    My definition is much broader than yours and includes clinical evidence and anecdotal evidence.

    I think you should apologize to me for saying I never presented any evidence. The correct statement is that I did not provide any evidence that satisfies your overly narrow standard.

    So because specifics didn't matter in one case, they don't matter in any case? That seems a little over-reaching.

    Yes, that's exactly what it does mean and I've posted that several times. But just for giggles, here's the definition from the FDA again.

    http://www.fda.gov/medicaldevices/deviceregulationandguidance/ivdregulatoryassistance/ucm124105.htm


    There are many reasons people fail with Lyme treatment. Lyme rarely exists in a vacuum. It usually co-exists with other bacterial infections, viral infections, and a compromised immune system.

    That's not the test's fault. Or even the doctor's fault though one would hope an experienced clinician could minimize these effects.

    I'd refer you to Horowitz's new book for a discussion on chronic illness, including Lyme.

    http://www.amazon.com/Why-Cant-Get-Better-Solving/dp/1250019400


    Making logical inferences based on your own words and quotes is not putting words in your mouth.

    But nonetheless, I apologize for saying that you told people *no* Lyme testing should be done or treatment should be undertaken.

    What you actually said was that you would do no Lyme testing outside of the (proven inaccurate) standard 2-tiered ELISA/WB testing done by a conventional doctor and that you would recommend the same course to others.

    I can then infer that means that you also think that the standard 4 week antibiotic course that has also been shown to be totally ineffective should also be undertaken, should you be one of the lucky half that manages to test positive.

    And the other half of the people who are actually sero-positive for Lyme should just go rot, apparently, until a study that meets your narrow standards, despite the lack of even a consensus on Lyme definition, has been done. Even though there is better testing available that can be used as a part of a clinical diagnosis by an experienced clinician.

    Personally, I think that the first statement was probably the lesser of the two evils.

    Well, not exactly. And that's why they used a selection of papers to come up with an average. Because all papers typically have some methodological or other flaws.

    And that paper was HIGHLY criticized...again, *complicated*, not "dodgy"...there's a difference and it has nothing to do with quackery.


    I've never talked about PCR testing so I'm not sure why you're bringing that up here when we are discussing ELISA and WB testing.

    There is value to it, because it is highly specific but it is not very sensitive.


    Again, that is a mistruth. If it were true, the lab would not have passed CLIA certification which requires reliability.

    Except all the people who got better and no longer have (possibly misdiagnosed) CFS...and/or Lyme.

    There is no question that long term antibiotics carry some risks. But so do long term untreated infections and those consequences are far greater in my opinion.

    http://www.ncbi.nlm.nih.gov/pubmed/19268485

    This study found insufficient evidence to deny chronic Lyme patients long term antibiotic treatment. They also feel that the risks of chronic untreated Lyme may be outweighed by the risks of antibiotics.

    It's a personal choice though.

    On that point, we agree.

    I just happen to think, based on ALL the evidence, that the *most* untrustworthy ones are those following the IDSA guidelines you recommend for Lyme testing and treatment.
  14. k-AUS

    k-AUS

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    australia
    ;)

    Hi End

    I'm an Aussie Lymie who has been diagnosed as positive for Borellia by Infectolab. My daughter has also tested positive by both Infectolab and Australian Biologics. I suggest you find a Lyme literate dr in Australia and join the "lyme Australia and Friends" Facebook group which can be found on the Karl McManus Foundation website. You will get a wealth of information with this group that is specific to Australia as well as a lot of great support. Hope to see you there sometime ;)
    end, Valentijn and Ema like this.
  15. Esther12

    Esther12 Senior Member

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    Regardless, the alternative testing should still be able to show that it is more reliable than the alternatives under blinded conditions.


    So you used the sort of 'evidence' that is used to claim that homeopathy is effective, mediums can communicate with the dead, and magical demons interfere with human affairs. I apologise for not making that clear.

    There are no specifics here which undermine the value of blinded assessment of testing techniques.

    CLIA certification does not require that labs provide evidence of the validity or reliability of the individual tests which they provide. We looked into this before. There was separate certification for New York which does require some evidence of this, and there, some IgeneX tests could not be sold.

    It might not be the doctors of tests fault. Anecdotal evidence tells us very little. But there is negative anecdotal evidence about.

    Where is the evidence that any of the alternative tests are more accurate than the mainstream tests?

    Regardless of any complexities and uncertainties, to say that the recommended 4 week antibiotic course has been shown to be completely ineffective is clearly wrong.

    In the early stages of Lyme disease, then reliable testing is not available and Lyme is a clinical diagnosis.


    But still, they selected data, much of which rested upon the low sensitivity of testing during the initial period of infection. That doesn't allow a point to be made about the sensitivity of testing for those suffering from symptoms over the longer term.

    I thought that paper did also looking at ELISA testing (I did read that one less closely):

    The 'More Smoke and Mirrors' response challenges the paper's criteria as to who should be considered a Lyme patient. This is, again, similar to the problems we saw with XMRV. There, blinded testing revealed that the WPI's testing was unreliable. Here, the only blinded testing of alternative tests we've had has shown them to be unreliable.

    We already discussed this paper, which did show that when testing being sold by IgeneX, when assessed under blinded conditions, was unreliable: http://www.ncbi.nlm.nih.gov/pubmed/11182109

    That was a piece in Medical Hypotheses before the AIDS denialism forced them to clear up their act.

    Sometimes people get better, sometimes they get worse - it's very difficult to interpret that outside of a controlled trial, and attempts to do so often serve to promote quackery.

    It can't be that you just happen to think - you must have some rational reason for deciding that there is evidence which indicates this. What is it?
  16. Ema

    Ema Senior Member

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    Talk abut putting words in someone's mouth!

    Evidence based medicine excludes the importance of clinical expertise and anecdotal evidence. There are lots of people who think that is a BIG mistake, including me.

    You're right; I don't believe that is a wise strategy and moves medicine forward the way you say it does.

    The last 30 years since it came into "favor" in some circles proves that point as well. Scientific studies are typically considered more flawed and biased in that time period, rather than less overall.

    And actually, I don't care if someone uses any of the methods you mention. Because they will cause no harm (except to pocketbook and that is an individual choice).

    There are infinite examples of things we don't fully understand in this world. Just because we don't understand how something works, doesn't mean it doesn't (even if it doesn't work all the time).

    Sometimes, there are multifactorial factors and something works just because we get a little lucky.

    And in the suffering this illness causes, I can live with that, along with my *full* definition of evidence, provided the risk of harm is low.

    Whereas the strategy you espouse, has great potential to cause harm by missed diagnoses and ineffective treatment and denial of care by insurance companies who decline to pay for any treatments they consider "experimental" even if *some* amount of benefit has been shown, or there is political controversy.

    I actually have a list of about 20 more studies that I could post to debate. But I don't want to anymore. I think I've been perfectly clear about the pros and cons of Lyme testing and the controversy over treatment, both medical and political.

    The literature is clear in only one way. Lyme is complicated. Just like ME/CFS. We can debate the studies ad nauseum as we have done.

    Or we can stop and say we have a fundamental difference in opinion and each believe the other to be giving terrible advice.

    But that only works if you *stop* defaming certified doctors and labs, posting studies that don't say exactly what you say they do, referring to tests I've never advocated for, and making personal attacks on my individual choices to use those doctors and labs to treat my illness by calling my doctors "quacks" using "dodgy" labs to practice medicine.

    Or we can even start a new thread to discuss the limitations of "evidence based medicine" and how insurance companies use demonstrably flawed studies to decide what treatments they will fund and how people suffer based on that approach.

    It's up to you.

    But I have only one word left for this thread...FUTILITY.


    Stephen Falken: Now, children, come on over here. I'm going to tell you a bedtime story. Are you sitting comfortably? Then I'll begin.

    Once upon a time, there lived a magnificent race of animals that dominated the world through age after age. They ran, they swam, and they fought and they flew, until suddenly, quite recently, they disappeared.

    Nature just gave up and started again. We weren't even apes then. We were just these smart little rodents hiding in the rocks. And when we go, nature will start again. With the bees, probably.

    Nature knows when to give up, David.

    David: I'm not giving up. If Joshua tricks them into launching an attack, it'll be your fault.

    Stephen Falken: My fault? The whole point was to practice nuclear war without destroying ourselves; to get the computer to learn from mistakes we could not afford to make. Except, that I never could get Joshua to learn the most important lesson.

    David: What's that?

    Stephen Falken: Futility. That there's a time when you should just give up.

    Jennifer: What kind of a lesson is that?

    Stephen Falken: Did you ever play tic-tac-toe?

    Jennifer: Yeah, of course.

    Stephen Falken: But you don't anymore.

    Jennifer: No.

    Stephen Falken: Why?

    Jennifer: Because it's a boring game. It's always a tie.

    Stephen Falken: Exactly. There's no way to win. The game itself is pointless!

    War Games, 1983
  17. Esther12

    Esther12 Senior Member

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    I've spoken to people who do claim that their clinical expertise, and anecdotal evidence, shows the value of exorcisms in medical care. I think that views like this, which are so unsupported by good evidence, are innately harmful. They promote distorted views of reality which can have a profound impact upon how patients live their lives.

    I think it's good to be critical of people making unfounded claims, particularly when these people are in positions of power and authority.

    That probably is what needs to be done. But then, you seem to be saying that your claims rest upon anecdotal evidence and the clinical expertise of some clinicians.

    Have you ever actually quoted me defaming anyone?

    Am I meant to stop stop saying what I think, while you go on saying what you think? That doesn't seem like a great deal.

    I am often critical of the behaviour of insurance companies and the way in which evidence based medicine is practised.
  18. end

    end Senior Member

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    k-AUS ledgend mate - thanks heaps!
    k-AUS likes this.

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