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ME/CFS: A disease at war with itself
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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. end

    end Senior Member

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    70% of CFS/ME patients are thought to have Lyme's so well worth getting tested

    Some say up to 97% of us are affected :(

    I think when our TH1 TH2/TH3-17 are unbalanced we become susceptible to ALL infections

    Which makes me wonder which Lab/method is most reliable to use?

    Does anyone know how reliable Australian Biologics are at the detection of Lyme's? http://www.australianbiologics.com.au

    Emailed them and tryed to get some details but they haven't replied

    Still researching these infections, so ANY pointers would be highly appreciated

    If anyone hasn't seen "Under our Skin" I've added a link below. Warning some scenes can be a little confronting:

    http://www.ovguide.com/under-our-skin-9202a8c04000641f80000000092874d5
  2. Martial

    Martial Senior Member

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    IgeneX is the most accurate State Side, some people also use it internationally that is the only lab I know that would give an accurate result and very sensitive testing.

    I think in the case of lyme disease it would be considered misdiagnosed M.E./CFS though, unless the person affected had a genetic pre disposition of getting CFS/M.E. and the lyme triggered it. At least if one fully treats the lyme disease they will know, and possibly fully recover as well. There are many co infections of lyme that are viral and those are treatable.
    Tristen and end like this.
  3. end

    end Senior Member

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    Thanks Martial...

    My chances of testing positive are high as australian biologics tested me for the DNA of seven bacteria fourteen years ago(none of them being Lyme)which came back negative... although I tested - Positive in there "Universal Screen" my question to them recently via email was "has history shown THAT finding, to be related, to a Lyme Infection now days?"

    Which I received no response...



    Just trying to get my head around it.. as some say you need to be tested at a lab that is local to you!

    As those species are likely to be the ones that have bitten you(providing you have not traveled out of your country)and there the species the local lab knows about and will test you for?
  4. Esther12

    Esther12 Senior Member

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    We can be pretty confident that this is not true, and that we should be suspicious of any doctors making these claims. There is a lot of dodgy information about Lyme around, and I would advise people to be really cautious. There is a problem with Lymes diagnoses being missed, but there is also a big problem with patients being wrongly told that they are suffering from an ongoing Lyme infection and encouraged to pursue inappropriate treatments. All this makes it very difficult for patients to know where they stand!
    Tristen likes this.
  5. end

    end Senior Member

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  6. Ema

    Ema Senior Member

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    "Currently most Australian Lyme Disease patients are being tested through the Igenex lab in California (www.igenex.com), the Infectolab in Germany (www.infectolab.com.au) and Australian Biologics in Sydney (www.australianbiologics.com.au).

    Infectolab and Igenex are specialty Lyme Disease testing laboratories and are government accredited labs, which at this time Australian Biologics is not."

    http://www.lymedisease.org.au/about-lyme-disease/interpreting-lyme-disease-blood-tests/

    I would contact the organization in the link above as they will have the most accurate information about Lyme testing in your country.
    end likes this.
  7. Ema

    Ema Senior Member

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    I'm not sure why we should dismiss a statistic out of hand when there is no research either way at this point.

    It's well accepted that nearly 100% of everyone has herpes viral infections yet not everyone suffers from symptoms. I don't see anyone calling those statistics suspicious.

    It's an immune problem which is why Lyme has to be a clinical diagnosis supported by testing just like how our top specialists diagnose chronic EBV, HHV6 etc.
    Valentijn likes this.
  8. Esther12

    Esther12 Senior Member

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    If people are claiming something like that with no evidence either way, then that would seem to be a good reason to be dismissive! I thought I had seen a population based study on Lyme prevalence? Maybe not though - that would seem to be a strange omission if it had not ever been done.

    Personally, I would go for the most standard, mainstream test available from my standard GP (I'm not sure what the Australian system is like: do you have GPs?). After the initial period of infection these tests now have good evidence for reliability, and a low risk of the sort of misdiagnosis that can occur with more alternative tests.
  9. Ema

    Ema Senior Member

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    I believe Dr Hugh Derham is estimating prevalence based on his clinical experience in his practice. That is evidence too. I see no evidence online that he is anything other than fully certified, licensed physician in Australia. Hardly "suspicious".

    You said you were "confident it wasn't true" rather than that you had no knowledge or reliable information on whether or not the statistic was true. Those are two very different statements.

    But I'm not sure why you think the lack of research is a strange omission considering we have no good population based studies on CFS prevalence in this country. Or perhaps you think the approx 1 million the CDC acknowledge is close enough?


    So you would pick the only lab on the list that is not government certified. Interesting.
  10. Esther12

    Esther12 Senior Member

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    Right - with CFS we have population based studies of limited value given the difficulty of assessing whether people have CFS. For Lyme, there are well validated blood tests available.

    I don't have much interest in claims founded upon clinical experience, other than as a starting point for doing real research. If he was finding such high rates of Lyme amongst CFS patients, with reliable testing, then he could easily conduct a study showing this to be the case and publish a paper. There has been a history of people making money from wrongly claiming those with CFS, or CFS like symptoms, have Lyme disease, so that makes me additionally sceptical of a new claim that most CFS patients have Lyme.

    I've not looked at any list, but just broadly laid out what I would do to get tested for Lyme.

    Sorry for not spending the time needed to really look up recent research on this stuff. I realise that this is a bit rude, but I'm really lacking in spare time at the moment, and this is a complicated topic.
    Tristen likes this.
  11. Ema

    Ema Senior Member

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    Well, not exactly.

    When there is contention over a diagnosis, people don't get properly tested even with the well validated tests. So that would skew any studies low, just as in CFS.

    Again, you're making claims like they are limited to Lyme when they are endemic to the health/research system in general.

    Who says that he is not doing exactly that? I don't see where it says one way or another what he is doing in the way of research at this time.

    Clinical expertise includes anecdotal evidence and is a vital part of medical practice and education. "Real" research includes clinical anecdotal evidence.

    "I ask myself whether today's medical establishment would accept as "scientific" the evidence that backed up their magnificent breakthroughs. I have a sneaky suspicion that today's doctors would pooh-pooh their evidence as "anecdotal". The word anecdotal now seems to be regarded as a term of abuse in research circles."

    http://www.theguardian.com/healthcare-network/2012/sep/03/in-praise-of-anecdotal-evidence

    It's not exactly that simple though when the country you live in (i.e. Australia) denies the very existence of the disease. Who exactly is going to fund that? You can't separate politics from healthcare research that cleanly, no matter how "right" it might be.

    How do you know for sure that they are "wrongly diagnosed"?

    People make money on all aspects of healthcare starting right at the very top with conventional doctors and pharmaceutical companies.

    Again, I'm not sure how this statement has anything to do with the problems and challenges in diagnosing Lyme or many other rare diseases.

    No need for apologies to me.

    I would apologize to all the people who follow the IDSA guidelines (or the like) recommended and thus suffer for years without proper recognition or treatment of their condition. Not everyone will have Lyme as the source of their problems, of course, but current conventional guidelines provide far too many false negatives and propagate suffering for a political agenda.[/quote]
    Last edited: Feb 25, 2014
  12. Esther12

    Esther12 Senior Member

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    I'm pretty critical of plenty of dodgy health stuff!


    Maybe he's just about to release a breakthrough paper... no sign yet though.

    If one is making factual claims to patients about the prevalence of Lyme amongst those diagnosed with CFS on the basis of anecdotes, then that's dodgy.


    Well, we have discussed that paper which showed that some of the testing used by IgeneX was unreleable and leading to false positives. Also, there are lots of reports of patients receiving positive diagnoses from things like Live Blood Testing, which is totally unreliable. It's possible that those patients receiving unfounded positive diagnoses all coincidentally happened to have Lyme disease anyway, but that seems pretty unlikely.


    What makes you think this is true?
  13. Ema

    Ema Senior Member

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    Maybe he is. I have no way to know what he is or isn't doing.

    But I'm also not calling him "suspicious" when all I know of him is that he is a fully certified doctor licensed to practice medicine in Australia.

    Since when is it dodgy to have an expert opinion based on your clinical work? I guess every doctor is dodgy then.

    I also didn't see anything about him saying that all patients with CFS have Lyme, just a comment on the percentage of patients in his practice that he estimates have Lyme. They may or may not also have CFS.

    Again, you do not know based on the information presented and are just jumping to conclusions based on zero facts.

    As I have repeatedly said, I am talking about the tests used by the top specialists...the IgeneX Western Blots and the Infectolabs Elispot testing.

    No reputable LLMD uses Live Blood Testing. Conflating the gold standard testing with testing like this is just trying to muddy the issue. There will always be people out there selling testing like that, it's again not limited to Lyme.

    Unfounded, according to you.

    Personally, I'll take the word of my fully licensed board certified doctor and testing done by a certified lab over that.

    My apologies, it was actually Barbc56 who made that comment. I have edited my post to reflect that error.
    Last edited: Feb 25, 2014
    Valentijn likes this.
  14. Esther12

    Esther12 Senior Member

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    I've not looked in to any one individual, and have only been stating that IF doctors are saying or doing certain things, then that is dodgy. I don't know what this doctor is doing.


    Not every, but a lot!


    I think that you've rather jumped to a conclusion on that one.


    Top specialists according to who? How do you assess which testing is gold standard?

    Also, this stemmed from my saying: "There has been a history of people making money from wrongly claiming those with CFS, or CFS like symptoms, have Lyme disease, so that makes me additionally sceptical of a new claim that most CFS patients have Lyme."


    We have previously discussed the evidence showing that IgeneX sold unreliable testing while being a certified lab. Being a certified lab often does not mean much. Equally, board certified doctors can be unreliable, untrustworthy and incompetent.

    Also - you'd seemingly just being concerned that I was 'muddying the water' by talking about unreliable testing, despite the fact that this was entirely related to the point I was defending, and now you seem to be saying that it is wrong for me to say that the positive results from these tests were unfounded.

    Okay. I still don't really understand what you meant there.
  15. Martial

    Martial Senior Member

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    You guys are scary smart lol
    end and Esther12 like this.
  16. Ema

    Ema Senior Member

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    If you haven't looked into a doctor, and you don't know what they are doing or saying, you should not call them "suspicious" especially if you're just lumping them in with a group you don't respect. Period. It's derogatory in nature.

    This has all been covered in the Lyme Testing thread.

    Please refer back to that thread for further clarification if necessary.

    OK. I think we already went over that point as well.

    Some people with CFS have Lyme; some don't. Who made a claim that most CFS patients have Lyme? If they only have Lyme, they've been misdiagnosed with CFS. That's all that claim said.

    Everyone in the healthcare field has a history and is out to make money.

    Not sure what the problem is here.


    There is no evidence that the Western Blot testing done by IgeneX is unreliable. None.

    It's not perfect, no testing is, but it meets the standards and is the best that we have. That is true of almost every lab test done by every lab anywhere.

    Being a certified lab means that they have proven this to the satisfaction of the government.

    Selling experimental testing under development is also done by every major lab. It doesn't make Labcorp unreliable nor does it make IgeneX.

    If I were a board certified doctor with zero complaints or disciplinary actions and you called me unreliable, untrustworthy, and incompetent in public, you had better have some actual proof, not just your opinion, or we would be meeting in a courtroom with your checkbook.

    I've never been talking about the unreliable testing, yet you keep bringing them up as examples of why no Lyme testing should be done or treatment should be undertaken. That's muddying the waters.

    Let's keep the discussion to the tests that are widely used by the top specialists and validated by the certifying body.

    OK? I am not sure what you mean either.
    Last edited: Feb 25, 2014
    Valentijn likes this.
  17. Esther12

    Esther12 Senior Member

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    I have not called any individual suspicious, as I have not looked into an individual doctor. I said:

    What is your problem with that?

    I remember explaining to you how testing would need to be validated. There was nothing in there to show that any of the specialist alternative testing was more reliable than bog-standard mainstream testing.

    Do I? Really? Do you have a quote for that?

    I didn't understand who was suffering for years without proper treatment because of following some guidelines:

  18. Ema

    Ema Senior Member

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    You said "we should be suspicious of any doctors" and then lumped Dr Derham into that group by saying you were "confident that his (clinical observation) wasn't true" and wasn't "real" science, in your opinion, anyway.

    You don't need to explain that to me. I understand what you want.

    I am trying to explain to you that it doesn't exist anywhere so to single Lyme out consistently for something that exists *nowhere* comes off as derogatory as well.

    You say you don't single Lyme out, but consistently criticize all areas of medicine for this flaw. But yet, on every single Lyme post, you defame IgeneX for being unreliable when they have met every criteria required by federal law to operate as a legitimate certified lab.

    Quackwatch is going down as a result of this type of behavior against Doctor's Data...another lab which I'm sure would inspire your derision. Defamation has no place on this forum disguised as "opinions" and the US courts agree with me.

    http://www.naturalnews.com/041832_quackwatch_stephen_barrett_defamation_lawsuit.html

    It also comes off as dismissive of any treatments that don't have the type of evidence you require, which dismisses the very real importance of clinical judgment and anecdotal evidence in the scientific process as a whole.

    Perhaps you don't mean for it to come off this way, but it does to me, and others, and I find it extremely patronizing.

    You really want me to quote how many times you've discouraged someone in a post from having testing outside the IDSA guidelines? I don't think there are enough hours in this day.

    I'll let your previous posts speak for themselves on this matter rather than further cluttering up this thread.


    Then please spend some time on Lyme forums and talk to patients who got "standard of care" testing that missed their positive diagnosis because their doctor didn't know about the limitations of the standard ELISA tests, or just flat out denied Lyme exists in their area, or insisted that because they didn't have a rash they didn't have Lyme, or just plain denied the existence of chronic Lyme.

    The treatment for chronic Lyme is antibiotics...which are handed out long term like candy for such "serious" conditions such as acne. A trial of antibiotics on a half-dead patient who presents with a positive clinical diagnosis and test from a reputable lab such as the ones I have been discussing is the far less evil option than following out of date guidelines from the CDC that were never meant to be diagnostic in the first place. In my opinion.
    Valentijn likes this.
  19. Esther12

    Esther12 Senior Member

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    I think that it would be best if you were to quote full sentences, and some of that has been rearranged, and some just isn't what I said.


    Some testing does have very good evidence of validity. I don't know much about quackwatch or the other stuff in that article, but it is nothing more than an empty puff piece built around the fact that Quackwatch's lawyer wants to spend more time collecting testimony: "Now, Botts has filed a motion to get more deposition time to continue delaying the case, which Bolen believes serves as proof that Barrett simply does not have any defense whatsoever and is basically now just engaging in stalling tactics. The suit itself, it should be noted, calls for more than $10 million in compensatory and punitive damages from Barrett, a lofty sum."

    I am critical of doctors making money from treatments which lack a good evidence base. On here, I tend to be most critical of the misleading ways in which CBT/GET are promoted, but I'll also dip into other areas. I know a bit more about the evidence around Lymes disease than a lot of other alternative testing, so am more likely to comment in relevant threads.

    I want you to post a quote which supports this claim about what I (supposedly) do: "I've never been talking about the unreliable testing, yet you keep bringing them up as examples of why no Lyme testing should be done or treatment should be undertaken."

    Other than during the initial period of infection, I've not seen good evidence of a Lyme test which is more sensitive than ELISA - it has a problem with false positives rather than negatives, as it can pick up other infections.

    I think that patients should be able to choose to take long-term anti-biotics, but this needs to take place in a context in which they are honestly informed about the poor evidence base used to support such an intervention, and are not misled by testing techniques and interpretations which have not been properly validated but which their doctors reassure them are reliable.
  20. Ema

    Ema Senior Member

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    I just simplified for the sake of brevity. I didn't take your words out of context to make them mean something else.


    Sure, just not much of it is used in either the diagnosis of Lyme, ME/CFS, or many other difficult to pin down rare diseases.

    The Quackwatch lawyers are simply delaying discovery trying to keep the veil behind who is behind Barrett intact. He is simply a figurehead. And when the Quackwatch lawyers are forced to provide the discovery, it is possible that RICO charges will be filed against the whole lot. Now that is information the public should know.

    Racketeering is not exactly "puffy" in my opinion.

    The judge just allowed a Third Amended Complaint...which is hardly ever done and basically guarantees that Quackwatch is toast. Doctor's Data now has the data to back up a libel charge that was earlier dismissed due to lack of substantiation...and the judge agrees that the facts are now there and the charges have been amended to reflect that along with an increase in punitive damages.

    They will never collect that money from Barrett but either way, they've made their defamation case.

    The US Federal courts say that defamation is wrong. And so should we.

    Here's one from this very thread:

    Personally, I would go for the most standard, mainstream test available from my standard GP.

    Then please do some more reading on ELISA testing. It's no more reliable than flipping a coin. And has no place as a screening test in the opinion of any experienced LLMD.

    Again, the problems with ELISA testing and the standard WB testing done by Labcorp (that only tests a few strains) were detailed in the Lyme Testing thread.

    I think your statement is highly biased, but for what it is worth, I did sign a statement from my LLMD acknowledging that I was choosing to treat my Lyme disease in a way that was not currently the standard of care recommended by the IDSA. I think this is pretty standard practice for LLMDs.
    Valentijn likes this.

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