Lyme testing - is there a Popular Lab?

[Esther12]

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

I said:

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

We can be pretty confident that this is not true, and that we should be suspicious of any doctors making these claims.

You said:

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.

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

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.

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

The Quackwatch lawyers are simply delaying discovery trying to keep the veil behind who is behind Barrett intact.

How do you know that?

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."

Here's one from this very thread:

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

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.

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.

You never provided any evidence to support these claims.

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.

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

 

[Ema]

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.

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

The results of this study suggest that GPs have difficulties in diagnosing CFS. There is a discrepancy between the number of patients that might be considered as having CFS and the actual number of patients that is diag- nosed with CFS.

Although, information is missing about the interactions between GPs and patients presenting with fatigue, we con- clude that this discrepancy is unfavorable.

It results in under diagnosis and therefore under treatment of CFS in primary care.

Based on the information in the electronic medical files, GPs mostly interpret fatigue as a symp- tom of psychosocial problems. They consider the psychosocial problem as the central issue and expect that attention limited to the somatic aspects of complaints, such as fatigue, hinders the solution of these problems.

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.

 

[Esther12]

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."

Then please do some more reading on ELISA testing. It's no more reliable than flipping a coin.

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).

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.

 

[Ema]

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.

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.

Recent studies (14) by the group responsible for Lyme disease proficiency testing for the College of American Pathologists (CAP) came to the conclusion that the currently available ELISA assays for Lyme disease do not have adequate sensitivity to meet the two-tiered approach recommended by the CDC/ASPHLD group (7). In addition, Bakken et al (14) stated that a screening test must have sensitivity >95% to adequately screen for Lyme disease and that the currently available ELISA tests do not meet this criteria.

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

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.

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.

Early reports suggested that considerable interlaboratory and intralaboratory variability exist in Lyme disease testing (17-19).

However, a review of the 1996 Lyme proficiency results by CAP (College of American Pathologists) and those by New York State demonstrates comparable agreement between the laboratories, similar to other bacterial infections and autoimmune conditions.

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.

Not to reach out to even more dodgy stuff.

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.

 

[Esther12]

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.

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

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.

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.

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.

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.

I've told you about the *real life* consequences of your advice and how it will contribute to even more suffering for patients.[

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

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.

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.

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.

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.

 

[Ema]

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

In 1994, the Association of State and Territorial Public Health Laboratory Directors, under a CDC grant, decided that there should be consistency between labs reporting Lyme disease Western Blots, and that a specific reporting criteria should be established. The consensus committe, chaired by Dr. Michael Osterholm, Ph.D., MN, set nationwide standards for Western Blot reporting.

This sounds good, but one could argue they made a bad situation worse. Prior to the hearing, virtually every lab had accepted bands 22, 23, 25, 31, and 34 kDa as specific and significant, and reported them as positive for exposure to Borrelia burgdorferi. Not only are these bands specific for Borrelia species, but they represent all of the major outer surface proteins being used to develop the Lyme vaccines.

The committee, without any clear reasoning, disqualified those bands as even being reportable.

After the consensus meeting, those bands were no longer acceptable.

The result was that what had been a fair-to-good test for detecting Lyme disease had now become poor, arguably useless.

Many scientists have questioned these new reporting criteria, and several wrote letters of protest to both the committee and to laboratory journals.

Many labs stopped reporting the actual bands and instead, simply reported the test as positive or negative, thus preventing any further interpretations. (90)

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/

A recent article in Medscape is titled New Lyme Culture Test Failed CDC Analysis. At first I took the article and paper at face value, and tried to dig into the errors of a chronic-Lyme disease researcher.

The only errors I could discover were by the CDC, and they seem blatant.

In the same article about the CDC paper was the explanation that they did not want tests that might lead to unnecessary antibiotic treatment. While it is understandable that the CDC would not want a bad test, why would they block a good test? Because it will cause people to get treated?

The CDC is on record taking the position of the Infectious Disease Society of America on treatment of Lyme disease, but it seems odd for the CDC to be taking a position to kill this test, especially considering that two different university hospitals are currently doing independent reviews of the same test.

...

For 20 years there has been no meaningful change in the treatment For Lyme disease or the scientific consensus due to the war. Contrast that with the HIV epidemic, and the pace of innovation by the exact same set of researchers and doctors, and yet the CDC estimates that 4 million people in the US may have been infected, and only 10% of those diagnosed.

A good Lyme test would go a large way to ending the wars, because at some point in the debate one side is right and the other is wrong. Eva Sapi is a researcher in at University of New Haven and has been treated with long term antibiotics for Lyme disease. She is firmly in the minority camp. She has done work in both the culturing of Lyme bacteria and the ability of Lyme bacteria to form biofilms.

Culturing bacteria is the gold standard, and has been in use for 100 years. A culture is a medium that allows a bacteria to reproduce. Given enough time, a small amount of bacteria can turn into a measurable amount of bacteria. And unlike PCR (DNA identification of the bacteria), culturing cannot detect dead bacteria that are lurking from a long extinguished infection.

Culturing Lyme bacteria has not worked in the past, and that part of the story is outside the scope of this post. There has been an attempt made about every decade, but they have proven faulty. What is different today is that there are microscopes now that can see the details of bacteria and microbiology is flourishing with new insights. And testing a test is very easy. Unless there is a war.

...

So two years after Eva’s paper comes out we hear the CDC say the test failed? The details are interesting.

First, the CDC never actually tested the test.

They merely reviewed Eva Sapi’s paper and said that it must have failed, they even concluded “(the data) indicate that laboratory contamination was the probable source of the borrelial DNA found in the patient samples.”

Note that the paper is about a culture, and the criticism was about DNA. In fact the laboratory in question does provide a second DNA service on any successful culture, primarily to detect which of the three types of Lyme bacteria were found. The CDC made no statement about the accuracy of the cultures.

But notice the tricky Medscape article title “New Lyme Culture Test Failed CDC Analysis.” Is it just my imagination, or did the CDC just broadcast to the scientific and medical community the impression that the test failed?

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

I have found no literature which discusses the issue of Lyme seroconversion. This phenomenon is well known to physicians who treat Lyme disease. It is not discussed by the CDC or in IDSA guidelines.

The CDC still maintains that a positive test is based on the two tier test or now- a Western blot showing 5/10 IgG WB bands.

Those of us who treat chronic Lyme know three things: The two tier test is inaccurate, A direct Western Blot which incorporates IgG is unhelpful since the vast majority of seropositive patients have IgM responses only and many patients who test positive for Lyme only do so after Herx responses folowing antibiotic therapy.

The IDSA does not address the existence of Lyme related Herx responses. IDSA physicians I have spoken with claim that seroconversion has no meaning; they believe it represents a false positive response.

It is also trying (to say the least) that the CDC has failed to inform laboratories and physicians what a positive Lyme CDC test means- despite congressional instruction to do so in 2002- signed into law by President Bush.

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.

 

[Esther12]

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.

 

[Ema]

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

No, those were my words.

YWhere is the evidence that this allows for more accurate testing for Lyme? More numbers are not the same as better testing,

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

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

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.

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.

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.

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.

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.

I've not said that individual patients should not do long-term antibiotics

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

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.

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

I think that criticism is helpful, and am hopeful that sustained, reasonable and informed criticism will help move medicine forward.

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.

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.

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?

 

[Ema]

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.

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.

 

[Esther12]

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.

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.

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

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

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.

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

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.

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.

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

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.

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.

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.

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?

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.

 

[Ema]

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

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.

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

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.

I don't mean to seem dismissive, but I think it's fair for me to not be that interested in your individual choices.

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.

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.

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?

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.

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).

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

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.

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

It’s time for the CDC and the NIH to abandon the failed two-tiered strategy and stop funding tests like the C6, which do no better. Patients want diagnostic tests with greater sensitivity so that patients can get diagnosed and treated.

A recent article pegs the number of Lyme tests performed annually at 3.4 million—which translates into a market of roughly $340 million a year. Not only do these numbers suggest that there is a lot more Lyme around than the CDC or IDSA acknowledge, but they also tell us that commercially vested interests and the researchers they consult with may have a stake in keeping the status quo in lab testing regardless of how bad the tests are.

Could monetary considerations have something to do with opposition to new lab tests?

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".

 

[Esther12]

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.

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.

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.

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

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.

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.

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?

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

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?

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.

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).

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".

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.

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".

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:

For a subset of 68 of 80 patients
with early acute Lyme disease, the interval from onset of EM
to first serum sample collection was known. The sensitivity for
detecting IgG antibody in 37 patients from whom serum was
collected within 1 week of onset of EM was only 0.162 (95%
CI, 0.077–0.311; figure 3). However, a dramatic increase in test
sensitivity for acute disease was observed after the second week
of illness. The sensitivity of this test for 31 patients from whom
serum was collected at 2–4 weeks after the onset of EM was
0.613 (95% CI, 0.438–0.763; figure 3). Serum samples from
individuals with late manifestations of Lyme disease were al-
most uniformly seropositive. Test sensitivities for patients with
Lyme arthritis and late neurologic disease were 0.97 (95% CI,
0.847–0.998) and 1.00 (95% CI, 0.741–1.00), respectively. The
few false-positive specimens from healthy blood donors or per-
sons with conditions other than Lyme disease (6 of 559) were
distributed among the 11 potentially cross-reactive control sam-
ple categories (table 1

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

In this study, the sensitivity of 2-tier testing in patients with later manifestations of Lyme disease was 100%, and the specificity was 99%, although 1 patient with facial palsy still had only an IgM response to B. burgdorferi 6 weeks after disease onset (rather than at 4 weeks after disease onset, as required by CDC criteria [2]). Similarly, a patient with Lyme disease- associated meninigitis and radiculoneuritis was recently described who had only a positive IgM response 5 weeks after disease onset [28]. Thus, the period of infection in which IgM criteria may be used to support the diagnosis of Lyme disease should be extended by several weeks.

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

Among 49 laboratory test-positive patients, the highest sensitivity (100%) for diagnosis was obtained when culture, skin PCR, and serologic tests were used, although serologic testing with skin PCR was almost as sensitive (92%). Plasma PCR was infrequently positive and provided no additional diagnostic value. Although culture is definitive and has a relatively high sensitivity, the results required a mean of 3.5 weeks to recovery.

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.

 

[Ema]

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

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.

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.

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.

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

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.

specifics around XMRV testing, but when the testing did not hold up under blinded conditions, those specifics did not matter.

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

Certification does not require evaluation of clinical sensitivity and specificity.

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

• Congress passed the Clinical Laboratory Improvement Amendments (CLIA) in 1988 establishing quality standards for all laboratory testing to ensure the accuracy, reliability and timeliness of patient test results regardless of where the test was performed.

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

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

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".

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.

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.

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.

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

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

Serologic Tests for Lyme Disease: More Smoke and Mirrors

http://cid.oxfordjournals.org.ezproxy.uindy.edu/content/47/8/1111.full.pdf html

To the Editor—The article by Steere et al. describing serologic testing for Lyme disease contains the following conclusion: “the sensitivity of 2-tier testing in patients with later manifestations of Lyme disease was 100%, and the specificity was 99%” [1, p. 192]. This conclusion is both disingenuous and misleading.

Steere et al. [1] classified 44 patients as having disseminated (stage 2) or persistent (stage 3) infection due to Borrelia burg- dorferi, the spirochetal agent of Lyme dis- ease. The mandatory inclusion criteria for these categories were neurologic, cardiac, or joint involvement and a serologic result positive for B. burgdorferi by ELISA and Western blot [2]. Thus, by definition, all patients with disseminated or persistent Lyme disease were required to have a pos- itive serologic test result.

It is disingenuous to define a condition by a positive test result and then state that the test has 100% sensitivity. The true sensitivity of the 2- tier test system has been estimated to be 44%–56% when standard commercial Lyme testing was evaluated in clinical practice [3–5]. In fact, on the basis of a recent molecular diagnostic study, the sen- sitivity of this testing approach may be as low as 7.5% [6]. Thus, the sensitivity data presented by Steere et al. [1] is not realistic.

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

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.

When this has happened, IgeneX's was found to be unreliable.

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

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!

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.

I think it's important that patients are able to trust their doctors, and all too often, they just cannot.

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.

 

[k-AUS]

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

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

 

[Esther12]

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

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

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 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.

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

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

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

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.

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

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

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.

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.

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.

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):

We compared high-volume plasma and skin biopsy culture, serological testing by enzyme-linked immunosorbent assay (ELISA) with supplemental immunoglobulin M (IgM) and IgG Western blotting, and skin/plasma PCR for Lyme disease diagnosis among patients presenting with clinical suspicion of Lyme disease.

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.

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

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

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.

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.

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.

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?

 

[Ema]

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.

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

 

[Esther12]

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.

...

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).

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.

We can debate the studies ad nauseum as we have done.

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.

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.

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.

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.

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

 

[end]

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

k-AUS ledgend mate - thanks heaps!