Documentary: Undercover in German Lyme Clinics

Aubry

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Why would I treat results based on invalid tests? I have sjogren and small fiber neuropathy. I never had Lyme.. its nonsense this test.
 

JES

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Why would I treat results based on invalid tests? I have sjogren and small fiber neuropathy. I never had Lyme.. its nonsense this test.
Or another possibility is simply you may have it, but it is not causing your symptoms. Many people infected with Lyme are asymptomatic, just as with COVID-19 and most form of infections, it's pretty amazing how many different pathogens we come in contact with during our lifetime. Borrelia Miyamotoi apparently doesn't even cause the erythema migrans sign and we don't know if this strain causes chronic Lyme disease.
 

pibee

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its strange how some people keep going to KDM and other Lyme quacks for decade and then complain they keep diagnosing them with lyme.
I guess it's called "free market" haha
 

Aubry

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Or another possibility is simply you may have it, but it is not causing your symptoms. Many people infected with Lyme are asymptomatic, just as with COVID-19 and most form of infections, it's pretty amazing how many different pathogens we come in contact with during our lifetime. Borrelia Miyamotoi apparently doesn't even cause the erythema migrans sign and we don't know if this strain causes chronic Lyme disease.
Ya sure... 90% has Borrelia Miyamotoi now lol. Its bullshit.
 

JES

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Ya sure... 90% has Borrelia Miyamotoi now lol. Its bullshit.
I'm curious, why do you get tested if you know it's bullshit? I am aware these tests haven't been as much confirmed as some other ones, but then again, all Lyme tests are somewhat unreliable and have rather poor sensitivity and specificity, so with any test you have a likelihood of a false negative or a false positive, it shouldn't come as a surprise. It doesn't mean the test is entirely bullshit, it can simply be giving you a false positive due to limited sensitivity.
 

msf

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its strange how some people keep going to KDM and other Lyme quacks for decade and then complain they keep diagnosing them with lyme.
I guess it's called "free market" haha
If you are using the term 'free market' ironically then your criticism makes more sense. People go to see doctors like KDM because so-called non- 'quacks' prescribe absolutely nothing and no tests for an illness that is entirely physical, therefore treating ME either as a magical entitiy that doesn't follow normal common sense rules - i.e. 'test for pathogens, treat if found and symptoms agree with chronic infection hypothesis'- or as something that can be ignored. So in my definition those doctors you are constrasting with KDM are either quacks themselves, in that they believe in magic (it's just they use their magical, non-scientific beliefs to justify not treating or testing the patient rather than treating them), or they are simply unethical and therefore bad doctors because they don't want to help ME patients get better. Now, if you are constrasting doctors like KDM with doctors who take a more rigorous. science-based approach to testing and treating ME, then it would be great if you could supply the forum with a list of these doctors. If you can do this then there truly is a 'free market' (i.e. where there is competition among doctors to provide quality medical services). Also, even if there is such a thing in the US, then that is not of much help to most of KDM's patients, as distance and regulations mean that they can only access the EU market, not the US one.
 
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msf

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Also, can you explain how a simple 'quack' like KDM managed to predict, in 2009, the increased levels of LPS in ME patients that Hanson demonstrated several years later? I don't believe in magic, or such coincidences, so my explanation for this is that he conducted scientific tests, as Hanson did, and thus came to the same answer. So in my view claiming that KDM is a simple 'quack' is difficult to reconcile that he was at the leading edge of science in ME in this particular case. Now if you say that he has on occasion gone beyond what the science currently can unequivocally support then I think that would be a fairer criticism, although one that can be levelled at many doctors (such as the ones that just treated Trump's COVID infection with experimental drugs).
 
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unicorn7

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Ya sure... 90% has Borrelia Miyamotoi now lol. Its bullshit.
They are finding B. Miyamotoi in 70% of people they tested, mostly in people who have long standing symptoms, with long history of negative tests. Of course, that's a very skewed population.

@ msf: I completely agree! I'm have become more trusting of KDM over the years, because a lot of what he told me, has been confirmed by other researchers.

I have always been told by KDM that this illness is very heterogenic. It's a complex disease where it's part chronic infection, partly the way your immune system reacts, partly the way your gut reacts. Plus that after being ill for a long time, there are individual complications (like autoimmunity) that make the case even more complex.
 

pibee

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If you are using the term 'free market' ironically then your criticism makes more sense. People go to see doctors like KDM because so-called non- 'quacks' prescribe absolutely nothing and no tests for an illness that is entirely physical, therefore treating ME either as a magical entitiy that doesn't follow normal common sense rules - i.e. 'test for pathogens, treat if found and symptoms agree with chronic infection hypothesis'- or as something that can be ignored. So in my definition those doctors you are constrasting with KDM are either quacks themselves, in that they believe in magic (it's just they use their magical, non-scientific beliefs to justify not treating or testing the patient rather than treating them), or they are simply unethical and therefore bad doctors because they don't want to help ME patients get better. Now, if you are constrasting doctors like KDM with doctors who take a more rigorous. science-based approach to testing and treating ME, then it would be great if you could supply the forum with a list of these doctors. If you can do this then there truly is a 'free market' (i.e. where there is competition among doctors to provide quality medical services). Also, even if there is such a thing in the US, then that is not of much help to most of KDM's patients, as distance and regulations mean that they can only access the EU market, not the US one.
i did not contrast anyone with KDM, .. if someone kept going to shrink or neurologist who keeps telling them they have conversion disorder, deep trauma, wrong beliefs, for years, only to expect something different, i'd have same comment i dont understand it.
it's not like KDM vs the mentioned is only option for now, maybe it was years ago but now there is so mch new science.

i don't really care what KDM predicted as right becasue he makes so many claims over and over again that of course part of it has to be true. Problem is he was overdosing people with antibiotics based on no positive lyme test even that LTT test he somehow ignores if negative... and all the claims of finding cures etc.
Doesnt' take too long to notice an issue.
and as I see KDM is not really affiliated with OMF, for a reason it seems
 

msf

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i did not contrast anyone with KDM, .. if someone kept going to shrink or neurologist who keeps telling them they have conversion disorder, deep trauma, wrong beliefs, for years, only to expect something different, i'd have same comment i dont understand it.
it's not like KDM vs the mentioned is only option for now, maybe it was years ago but now there is so mch new science.

i don't really care what KDM predicted as right becasue he makes so many claims over and over again that of course part of it has to be true. Problem is he was overdosing people with antibiotics based on no positive lyme test even that LTT test he somehow ignores if negative... and all the claims of finding cures etc.
Doesnt' take too long to notice an issue.
and as I see KDM is not really affiliated with OMF, for a reason it seems
I was trying to point out that 'quack' is a relative term, and that almost all doctors stray from established science to some degree. Also, if you don't care about the facts of the matter and just want to concentrate on one part then there doesn't seem much point in us debating KDM's overall merits as a ME doctor/researcher.

With regards to the Lyme diagnoses and treatment, I guess you think ILADS doctors are all 'quacks' and the IDSA ones are all totally legit and science-based. I think if you looked into it you would find that the reality is a little bit more complicated than that, as it is for ME doctors. I hope you are aware that some doctors have treated ME patients with Rituximab, based on flimsier science than many Lyme diagnoses - are you similarly critical of those doctors? Or do you instead, as I do, see the majority of them as actively trying to make their patients better in spite of a lack of scientific evidence? That is how I see KDM, and pretty much any ME doctor who actually treats patients, unless they are clearly peddling 'quack' cures like the Lightning Process or GET etc. The question then becomes whether doctors with this inclination to try things should be allowed to do so in the case of generally non-fatal illnesses like ME, but it is impossible to give an answer to this question while ignoring the broader question of whether it is ethical for 99% of doctors to ignore ME patients. I pointed out this problem above but you did not seem to be interested in this issue either, yet do you really think people would travel to other countries to get treatment if their own healthcare systems actually offered science-based treatment and testing?

Oh, and please tell us about these new options.

Also, with regard to he makes so 'many claims over and over again that of course part of it has to be true:' I guess you believe in coincidences then. It's odd that, given that there have been thousands of claims made about the etiology of ME by people other than KDM, that none of these other claims referred to LPS.
 
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msf

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Mattie I am so sorry to hear about your experience.

But kudos for posting this video! I would argue that 95 % of all ME/CFS patients have fallen for sham tests / treatments during their illness (I know I have), and it is incredibly brave of you to come forward and share your experience.

The documentary has caused a lot of debate in Denmark, where a lot of people still swear by the lyme treatment they have received, even after it has been uncovered to be fraudulent.

The documentary has also been one of the reasons why I have always been skeptic of ME/CFS doctors who claim they can test and find something wrong in ME/CFS patients like Dr. Meirleir.
This post is more evidence of the kind of the kind of special treatment even ME patients give ME - I think it is good to be sceptical, but the idea that there is nothing to test and nothing to treat in ME is responsible for the lack of ME research over the past several decades. I wonder if the poster has a problem with the Charite hospital in Berline testing ME patients for autoantibodies and treating them for this (with IVIG I believe). For me, Himmunitas and Charite are the only places in Europe where doctors treat ME patients as they would any other patient - testing them to see if they can identify an anomaly and then assuming that anomaly is causing their current symptoms and therefore prescribing the standard (or in the case of Lyme diagnoses, one of the standard) treatments for it. Sometimes these treatments have less evidence and diagnoses have less evidence behind them, sometimes more, but they are still applying a testing and treatment model that is usually thrown out the window by 99% of doctors when they hear 'ME.'
 

msf

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Yes ILADS is quackery. Most of 'Lyme' people have autoimmune diseases.
Chronic Lyme exists but it's vastly overdiagnosed..thus most don't improve from antibiotics.
It's odd to quote me just saying 'I...' Anyway, it seems that most of these issues are simple for you, so good luck with that approach to what most people would agree is a complex disease.