1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

Lyme testing

Discussion in 'Lyme Disease and Co-Infections' started by Esther12, Sep 10, 2013.

  1. beaverfury

    beaverfury beaverfury

    Messages:
    429
    Likes:
    430
    West Australia

    Hm. Apparently Igenex Australia does an 'Australian test panel' which looks for bands associated more with European strains of borrelia. Borrelia garnii, borrelia afzelii. http://www.lymeaustralia.com/igenex-pathology-lab.html

    There seems to be a little more sensitivity involved when testing assays for these strains, if i am making the below abstract out correctly.


    Performance of United States serologic assays in the diagnosis of Lyme borreliosis acquired in Europe.

    http://www.ncbi.nlm.nih.gov/pubmed/23592827
    RESULTS: For the detection of European-acquired infection, conventional 2-tiered testing (enzyme-linked immunosorbent assay [ELISA] followed by immunoblotting) using US assays had an overall sensitivity and specificity of 52% and 100%, compared with 81% (P = .0007) and 99% (P = 1.00) using analogous European tests. The sensitivity of a US C6 ELISA used as a stand-alone test (88% overall) was statistically comparable to that of conventional 2-tiered testing using European tests (P = .47) and was 100% specific. Similarly, an alternative 2-tiered algorithm using a standard US ELISA followed by a C6 ELISA was comparably sensitive (84% overall) compared with conventional 2-tiered testing using European assays (P = .82), and specificity remained 100%.

    Infectolabs of Germany also tests for these European bands.
  2. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456
    Those opinions really don't seem to be founded on any good evidence. It's that sort of thing which I worry could lead to patients thinking that they were paying for good, reliable and scientifically validated testing, when really that is not the case at all.

    I find that it is often really worth trying to go back to the evidence and raw data, rather than trusting the views of others.

    Maybe it would be worth having a stickied thread for links to evidence on the validity of all the different forms of testing that are being sold to CFS patients, that way people could examine and dig into the data, which could also be helpful to others.
  3. Ema

    Ema Senior Member

    Messages:
    3,321
    Likes:
    3,554
    Midwest USA
    Or possibly it would be better to accept that all testing has limitations and can rarely ever be used as a replacement for clinical care.

    I'm afraid that sticky on testing would be as long and repetitive as this thread.
    k-AUS, Sushi and SOC like this.
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456
    It's is still worthwhile to inform people of the evidence with regards to the limits and value of different forms of testing. All testing has limitations, but some is very good and reliable and some is worthless. The testing for XMRV which the WPI sold to patients was flawed, and this could have had serious implications for those affected. Equally, the testing from Igenex which was assessed in that paper was also flawed. For some other testing, those selling it have not provided evidence to show whether it is of any value or not. People should have access to this sort of information so that they can make informed decisions about their own care.
  5. roxie60

    roxie60 Senior Member

    Messages:
    1,677
    Likes:
    524
    Central Illinois, USA
    Wow, found a pdf with various symptoms attibuted to Lyme, sadly amazing nd I can find nearly all my symps on the list (nothing new there, finding my sypms on various lists tryig to figure out what is wrong).

    http://www.lymeinfo.net/medical/LDSymptoms.pdf
  6. Ema

    Ema Senior Member

    Messages:
    3,321
    Likes:
    3,554
    Midwest USA
    Right. The Lyme testing is just like all the other testing for all the other illnesses in that some is very good and reliable and some is worthless.

    For example, the IgeneX Western Blots are better than LabCorp's because they test for more strains and provide more information about the relative strength of the band.

    Sometimes tests are developed that turn out to be faulty and then they are removed from offer. Again, this is not limited to Lyme. And if it meant that a lab was dodgy to do this, I doubt we would have any labs left.

    This is why lab testing can't diagnose; only people can make the sort of connections necessary to interpret the lab work in the context of the patient and their symptoms.
    Sushi and Valentijn like this.
  7. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456
    That is part of the trouble. It's a lot easier to find lists with lots of symptoms on than evidence as to the cause of those symptoms or how to effectively treat them.

    All testing has limitations, but some is very good and reliable and some is worthless. So far, we have not seen any evidence that the testing from IgeneX is preferable to the testing from any 'mainstream' lab (you speak as if you have such evidence, but if you do, then you have not yet posted it), and we have seen evidence that they have a history of selling tests which were wholly unreliable and of no value. When tests are developed, they should be assessed before they are sold to patients, rather than making money from them until someone else comes along and does the work which shows that the test being sold is of no value.

    So far, there is no evidence to support the claims of 'alternative' Lyme doctors, or to indicate that the alternative Lyme testing which they sell is of any value. Of the two studies we've found assessing the validity of this testing, both have found serious problems. The clinical judgement of doctors who use testing which is lacking in any evidence of validity may be no more reliable that the results from the tests which they sell.
  8. Ema

    Ema Senior Member

    Messages:
    3,321
    Likes:
    3,554
    Midwest USA
    That is just not true.

    The study you posted talked about a completely different kind of testing than the Western Blot. There is no study that shows that the Western Blot testing is not valid or reliable. In fact, their certifications prove that they are reliable. Many labs offer this type of testing, not just IgeneX.

    Some doctors will make accurate clinical judgments based on testing and others will not. Some doctors have political or financial motivations and others do not. Some doctors are just plain smarter than others. But they all use all the same testing which has all the same limitations.
  9. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456
    What is not true? Everything I said was accurate.

    IgeneX does sell 'mainstream' testing, but there is no reason to think that there's is in any way preferable to that provided by other 'mainstream' labs. There is no evidence for the value of the additional/alternative testing provided, and there is a danger that it will lead to inaccurate diagnoses. IgeneX also has a history of selling worthless tests to patients.

    My criticism of labs selling tests that have no evidence of value, or of the doctors who encourage their patients to pay for these tests, does not denigrate patients. Acting as if criticism of the unsupported and spun claims being made is an attack on patients is a cheap trick like that used by psychosocial researchers pretending that condemnation of their quackery and misrepresentation of the evidence stigmatises those with mental health problems. I'm just interested in the truth, and ensuring that people are informed about the evidence available. I really want to help all of those who are having to live with health problems, particularly when they're poorly understood, and think that the best thing I can do at the moment is to be as honest as I can about what it is that the evidence currently shows, and point out when people make claims that are not supported by the evidence.
    svetoslav80 and wdb like this.
  10. vamah

    vamah Senior Member

    Messages:
    577
    Likes:
    644
    Washington , DC area
    It may be that my non-science brain is not understanding or that I am just having trouble reading because I'm not feeling well, but I'm confused about what the specific problems are that you think exist with this testing. This isn't challenging your opinion so much as not quite understanding what it is based on.

    Is it that you think these labs are themselves sketchy? That their testing protocols are not up to snuff?

    Is it that you think the tests themselves are not testing anything that conventinal tests are not? Or that, while they may test in more detail, that those details are not diagnostically important?

    Or are you just saying that treatment outcomes are not any better for people who have these tests?

    I apologize if I am asking you to repeat information you have already given but, as I said, not feeling well and brain fog is extra heavy lately.
  11. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456
    No probs Vamah. Thanks for asking, and I'm happy to try to clear up as simply and concisely as I can (this is a long thread).

    [1] I think that it is dodgy to sell tests that have not been shown to be of any value. There is a responsibility to gather evidence which shows some validity for the testing being sold, and that new forms of testing are able to provide useful new information over the testing which is already available. For some of the alternative Lyme testing available, they have been sold for a long time without any evidence that they are of any more value to patients than the WPI's XMRV testing (no value). I think that this reflects poorly upon the test, the labs selling the test, and the doctors promoting the test.

    [2] The alternative tests do provide additional numbers, but there is no evidence that these are of any clinical value, and some reason to be concerned that they may lead to patients being given inaccurate diagnoses.

    [3] There is no evidence that these tests lead to improved outcomes for those who pay for them.
  12. Ema

    Ema Senior Member

    Messages:
    3,321
    Likes:
    3,554
    Midwest USA
    I can summarize in paraphrase.

    No one should have any testing or treatment for any disease or condition that is not supported by double blinded randomized studies as these are the only "real" science.

    Anyone who does participate in such unsupported treatment is participating in quackery and labs that sell such tests are dodgy. CLIA certification, which by definition means that a lab is reliable and accurate, is meaningless in the absence of a randomized double blinded research study.

    Those who treat Lyme should pony up to pay for the research studies themselves even though this is not required for any other disease. Since this has not happened in a rapid enough time frame, clearly Lyme is not a real disease and treating it has no value.
  13. vamah

    vamah Senior Member

    Messages:
    577
    Likes:
    644
    Washington , DC area
    The reasoning just seems a bit circular: the labs are sketchy because they are selling unreliable tests which shouldn't be trusted because they are sold by sketchy labs. I know this is an oversimplification and not really what you said, but I feel a bit of that creeping in there.

    I know I am biased because I have a friend who has very successfully treated chronic lyme and has a lot of faith in the igenex testing. This is not a gullible person, but one of the smartest people I know who has done tons of reading on the research in the decade of treating this disease.

    This is completely anecdotal, yes. But before I got sick I was a complete science-based medicine, trust the mainstream kind of a person. Now I know how little doctors actually know and find myself with a choice between accepting what I know isn't working or seeing what alternative testing can offer me. My personal choice, yes. And I know many people don't do the research that I do to make an informed choice.and you are only trying to make sure that they do.

    I hope I am not being unfair to you with this post. I see both sides of this argument. I guess I am fortunate to have the resources to possibly throw away on possibly shady tests on the possibility that they will help me.
    roxie60 and SOC like this.
  14. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456
    Not a great summary of my position, as it's longer than what I wrote, and completely different. I disagree with almost all of it.

    It's not at all circular. It all flows from the evidence:

    There is evidence showing that some labs have been selling worthless test for Lyme disease: this is reason to be wary of them. There is no evidence for the value of 'alternative' testing, therefore it is dodgy to have been selling them all this time. If there were evidence that the 'alternative' Lyme testing was valid, and able to help explain the health problems of a significant number of patients, then this would be great, and totally undermine all that I have said - yet there is not. It all flows from the evidence.

    Also, I've been using 'mainstream' in this discussion as a short-hand way of distinguishing from 'alternative' Lyme testing, but generally, I am far from enamoured with 'mainstream medicine' and spend most of my time on this forum criticising what would normally be considered 'mainstream medicine' for not being sufficiently rigorous, scientific or evidence based.

    I think that people should be free to decide for themselves how they live their own lives, but I also think that within medicine, mainstream and alternative, there is too often a tolerance for misleading claims about the value of treatments, testing and the judgements of supposed experts - all of these things can strip patients of the ability to give truly informed consent for interventions. There needs to be more of a commitment to making evidence available to patients which allows them to make their own informed decisions, rather than allowing those with medical qualifications to go on acting as if they have greater expertise and knowledge than they truly do.
  15. k-AUS

    k-AUS

    Messages:
    50
    Likes:
    66
    australia
    I think the gist of this thread was reached a long time ago - be wary of lyme tests. Well, I think that was the initial idea. However, it has progressed to a point that I find concerning -

    1. What if some people are being influenced NOT to get tested for lyme and co-infections and they DO have it? For many of us it is not a cheap process and if there is doubt then that could easily make us reconsider.

    2. What if we DO have lyme and we forgo treatment because this thread has caused us to doubt the lab tests reliability?

    I know reading a thread like this would possibly have influenced my decision to be tested for lyme and co-infections, especially as the Australian govt. doesn't recognise borrellia as having reached our shores. Also factor in the costs - over $1000 (infectolab).

    It is good to be aware and question lab/medical/Dr. practices but when it gets to a point where it may stop people from pursuing testing and treatment, then that could have a disasterous outcome.
    sianrecovery, Ema, Sushi and 2 others like this.
  16. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456
    For the 'alternative' Lyme testing, we have no evidence that their results are any more valuable than spiritual crystal assessments. Should we worry about putting people off being tested in this way, out of fear that it will lead to a missed diagnosis? Or could lead to people doubting the recommended treatment of chants and cleansing dances? How lacking in evidence does a possible medical intervention need to be before it's acceptable to say: 'I don't think that's worth the trouble'?

    Obviously, if anyone has had a positive result for a validated test, they should pursue treatment, It could well be worth while for lots of people to get tested for Lyme, even if they have no particularly good reason for thinking that they have a Lyme infection, but I think that they should make sure that they use testing and interpretation of results which has good evidence showing validity and reliability. Even for the best available tests for Lyme, that have good evidence showing their validity and reliability, they are still not perfect, and an awareness of this is important.

    I think that if there was greater awareness of the evidence, it probably would lead to people spending less on Lyme tests and on prolonged treatment, but that would be up to the individual patients.
  17. Ema

    Ema Senior Member

    Messages:
    3,321
    Likes:
    3,554
    Midwest USA
    Dancing and chanting may or may not be helpful but they will cause no harm except possibly to pocketbook. There's no reason to talk someone out of this type of treatment. We can think it is dumb all day long but there is no risk. And the mind has been shown to be powerful in studies, so dance and chant away. Or not!

    On the other hand, not testing for Lyme with the best we have available from a good doctor does have the potential to cause great harm.

    So you can't put those two in the same category. One might even say it is a little disparaging of Lyme treatment to equate the two.
    sianrecovery, k-AUS and Sushi like this.
  18. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456

    It's important not to conflate the 'alternative Lyme' testing and treatment with all Lyme testing and treatment. We do have good evidence showing what a serious diseaseLyme is, and evidence which supports the use of some testing and treatment for it.

    It is important to use the best available testing - that which has supporting evidence showing it's validity, reliability and specificity, at her than alternative testing which has no evidence of value.
  19. vamah

    vamah Senior Member

    Messages:
    577
    Likes:
    644
    Washington , DC area
    Unfortunately the best available testing is good at finding early stage lyme infections, but not good at all with later stage lyme. So should chronic lyme be treated based on symptoms and patient history only, without bothering with testing that may or may not be useful? That isn't a facetious question. It's a valid point of view and one that I am interested in your take on.

    Or do you believe, like much of mainstream medicine, that there is no such animal as chronic lyme disease and that lyme-like symptoms, in absence of a positive mainstream test, must have some other cause?

    I think your comparison of alternative testing to healing crystals was unfortunate and needlessly provocative. These tests may have yet to prove useful (or not), but such is the case with all scientific discoveries at one time or another. That doesn't mean they are comparable to voodoo.
    k-AUS and Kina like this.
  20. Esther12

    Esther12 Senior Member

    Messages:
    5,266
    Likes:
    5,456
    Hi there. I might have to ask a couple of questions before responding, in order to avoid any confusion. Also, you've raised some new issues which haven't been discussed before, so it might be worth checking on what evidence there is, so that we're both aware of it.

    Sorry this is a bit long a rambling. It's a complicated matter, I've had other things to do while replying, and I'm knackered. Best.

    [1] Is there any evidence that this is true? My understanding was that 'mainstream' Lyme tests are weakest at detecting very early infections.

    [3] (Some points on 3 first).

    'Chronic Lyme' can mean lots of different things. 'Mainstream' medicine acknowledges that Lyme can go untreated, causing ever more serious symptoms and harm to the patient's health. This is small 'c' chronic Lyme and uncontroversial.

    There now seems to be growing acknowledgement that even when treated, Lyme disease can still leave patients with on-going problems. It seems to be that these patients have been badly treated in the past, and that there has not been sufficient contrition from the 'mainstream' doctors who gave unwarranted reassurance to patients concerned about the impact Lyme had upon their health. Currently there is no good evidence that these on-going symptoms are a result of ongoing infection - it is possible that they are even though their is no evidence for this, or they could be a result of damage already done, of an on-going immunological response, or any number of other problems. These is still no evidence that 'alternative' Lyme testing is of value for this group either.

    Thirdly, we have the group of patients who suffer from a range of different symptoms and have been told that they have Chronic Lyme, but have no other evidence of having Lyme disease. I see no good reason for choosing to associate these people's health problems with Lyme. We've had a long period of 'alternative Lyme' proponents arguing that they have access to tests which show that these people's symptoms are associated with Lyme infection, but if this were the case they could easily produce compelling evidence to support their claims, and they have not done this. Instead, when 'alternative' Lyme testing has been assessed, it has been found it be seriously flawed.

    [2] I don't think that the alternative Lyme testing is of any value. I think that seeking treatment for Lyme without having a 'positive' result following one of these tests is probably more sensible than paying for a test lacking in any evidence of value first, but that's not to say that I think that this is a good idea. Even for those patients with a confirmed diagnosis of Lyme (by 'mainstream' testing) that suffer from ongoing symptoms after normal treatment, there is only very weak evidence of value for the long-term treatments available (generally negative results with one or two weak positives I think).

    [4] When we're discussing concern that people may not seek testing that has no evidence of value, I think it's fair to ask 'when is it acceptable to say that a potential medical intervention is not worth the money and trouble'? Do we need to get to crystal healing? If we're always afraid of not pursuing a medical intervention, then we could end up spending all of our time and money on possibly helpful medical interventions that have no evidence of value. That doesn't sound like a good idea to me.

    I think that there are lots of people, in mainstream and alternative medicine, happy to make money from unwarranted claims of expertise, and that we as patients should be pushing back, and asking for some evidence of some value before we spend our time and money on their 'medicine'. It should be up to patients to decide how they want to live their lives, and that requires a commitment to informed consent, and making available the evidence which is used to justify the claim that a particular intervention is worthwhile.

See more popular forum discussions.

Share This Page