Documentary: Undercover in German Lyme Clinics

mattie

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It was quite shocking to see the dutch documentary "Zembla" yesterday on dutch television, titled:
"Undercover in German Lyme Clinics".

If you can understand dutch, you can watch it here:
https://www.npo.nl/zembla-undercover-in-de-duitse-lyme-kliniek/18-10-2017/BV_101384732

Edit: All interviews with german doctors are in english by the way, those parts where they are confronted with their false test outcomes are very much worth watching.

Danish full documentary can be viewed here:
http://www.dailymotion.com/video/x4wmdyj

Short summary:
Several totally healthy danish journalists as well as 4 well known totally healthy danish tv-personalities sent their blood samples to both Arminlabs and BCA Clinic in Augsburg.
They were all found positive for Lyme disease with the Elispot test and treatment was recommended to them.

Same thing for a severely ill danish lady who had been diagnosed with ALS in Denmark:
She went for a second opinion to BCA in Augsburg and was told she had lyme disease and could be cured.

I heard about a bit too many false positives coming from Augsburg but I did not know it was this bad. Also thought the LTT Elispot is the most reliable/sensitive test at the moment. It's not.

I am so happy now with my positive LTT result from Arminlabs. :( not.
It clearly means nothing.
Took 7 months of heavy antibiotics for nothing. It made my ME symptoms worse.
 
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Thinktank

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The positive LTT test is the reason i was diagnosed with "chronic lyme disease". Thanks to that misdiagnosis and 3 years of heavy antibiotic treatment, including 6 months (!) IV antibiotics my health has declined. One example is that i already had inflammatory bowel disease (Crohn's disease) before treatment and the antibiotics have made it much worse.
If i could just turn back time... :(

I know i keep repeating myself on the forum but i want to warn others not to fall in the same trap like i and my girlfriend did.
Chronic lyme disease absolutely exists but the current testing methods are unreliable, especially the LTT / Elispot which churns out a positive result in nearly everyone.
 
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duncan

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The whole chronic lyme thing is a scam, or a delusion.
Tell that to the surviving family members of Vickie Logan. Tell that to those reportedly one out of five Lyme patients who fail to see their symptoms resolve with conventional treatments.

Are there scams? Yes.

Are there patients with late stage Lyme refractory to mainstream treatment protocols? Yes.

But to apply a broad brush stroke to an entire category of disease seems a little reckless.
 

Hugo

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The whole chronic lyme thing is a scam, or a delusion. Apologies if feelings are hurt by this.
Possible the german clinic but hardly the diagnose chronic lyme. I myself got lyme (proven) after a tickbite. I already had ME and I got worse and worse after the initial treatment of two weeks of antibiotics. Im still not better, im not alone.

It is far more complicated than just antibiotic treatment though. The best researchers I know in the field of ME where I live are well aware of how complicated lyme could be.
 

A.B.

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Possible the german clinic but hardly the diagnose chronic lyme.
What about the doctors that order tests from this clinic? After a while of doing that, they must realize that something is wrong when the tests are hardly ever negative. Unless they already believe that almost everyone with various chronic diseases has really a chronic lyme infection. They probably already believe that or they would not be ordering tests from this lab in the first place. This seems to suggest there is a severe deficit of critical thought in this area. Alternatively, that there is no interest in the truth, just in selling products and services to desperate patients.
 

perrier

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It was quite shocking to see the dutch documentary "Zembla" yesterday on dutch television, titled:
"Undercover in German Lyme Clinics".

If you can understand dutch, you can watch it here:
https://www.npo.nl/zembla-undercover-in-de-duitse-lyme-kliniek/18-10-2017/BV_101384732

Danish full documentary can be viewed here:
http://www.dailymotion.com/video/x4wmdyj

Bottom line:
Several totally healthy danish journalists as well as 4 well known totally healthy danish tv-personalities sent their blood samples to both Arminlabs and BCA Clinic in Augsburg.
They were all found positive for Lyme disease with the Elispot test and treatment was recommended to them.

Same thing for a severely ill danish lady who had been diagnosed with ALS in Denmark:
She went for a second opinion to BCA in Augsburg and was told she had lyme disease and could be cured.

I heard about a bit too many false positives coming from Augsburg but I did not know it was this bad. Also thought the LTT Elispot is the most reliable/sensitive test at the moment. It's not.

I am so happy now with my positive LTT result from Arminlabs. :(
It clearly means nothing.
Took 7 months of heavy antibiotics for nothing. It made my ME symptoms worse.
Thank you very much for posting this absolutely despicable information. I wish it were disseminated in North America. They should have their permits to practice revoked.
 

sarah darwins

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I would like to know more about the methodology used. I don’t know anything about BCA Augsburg, but I thought the Amin Labs test was intended to be used as a diagnostic tool by physicians, not as a yes/no type test.

So who recommended treatment to these people? Or did the lab actually recommend consulting a physician (which would be a somewhat different thing)?

Also, is BCA Augsburg a lab or a clinic? Or both?

(it's hard to say too much when those of us who don't speak Danish or Dutch can't watch the programme — I grown very wary of television exposé docs after seeing far too many that were incredibly one-sided and dumb, but maybe that's just the UK)
 

pattismith

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I don't know if there is a problem with Arminlab, but I did the Lyme LTT test in another lab in Germany and it came back negative.
A friend of mine did the same test and was negative too.

http://www.imd-berlin.de/en/special...formation-test-for-borrelia-ltt-borrelia.html

I took 4 months antibiotics because it was efficient on some of my symptoms.
I suggest that if one can't feel any improvement very quickly, the treatment should be stopped.
It can be really harmful to us.
 

duncan

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Thank you very much for posting this absolutely despicable information. I wish it were disseminated in North America. They should have their permits to practice revoked.
Why North America? You think the ELISA or WB are much better?? I have never used the Elispot, but its logical underpinning sounded appealing. So I think one needs to take the good reports with the bad, and do some basic sleuthing and self-interpreting - something I do on a semi-regular basis with the most fundamental Bb test of them all - the western blot.

Welcome to the status quo in Lymeland. Most testing, other than direct testing on a bulls-eye rash, is indirect, and therefore a function of degree. It's ALL imperfect and therefore potentially suspect. Yes, there is PCR testing, but that is like finding a needle in a haystack; one might as well play the lottery.

So, where are the research $'s to build a better Lyme test? This is where one begins to toe the politic's line. BTW, what few $'s are being thrown toward improved Bb diagnostics are almost completely dedicated to EARLY Lyme - I am unaware of anything specific to late stage disseminated. Any one want to hazard a guess as to how many late stage disseminated Lyme patients are out there without a life line?

Edited to add - there is also the direct antigen urine test, but I cannot recall its name at the moment - but it has yet to take off as many had hoped, at least as far as I am aware.
 
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sarah darwins

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I don't know if there is a problem with Arminlab, but I did the Lyme LTT test in another lab in Germany and it came back negative.
A friend of mine did the same test and was negative too.

http://www.imd-berlin.de/en/special...formation-test-for-borrelia-ltt-borrelia.html

I took 4 months antibiotics because it was efficient on some of my symptoms.
I suggest that if one can't feel any improvement very quickly, the treatment should be stopped.
It can be really harmful to us.
Pragmatic and sensible, patti. I did the Arminlab test and it was borderline. I did get a 'post lyme' diagnosis, and consequent treatment for gut dysbiosis was very helpful to me, ridding me of terrible migraines (typically 6 per month, each lasting a couple of days — hellish). I've suspended treatment, at least for the moment, as I felt it had done what it could for me and was wary of doing more antibiotics (partly because of salutary experiences of some others here). I can't be certain the diagnosis was correct, but what followed was treatment for symptoms that was highly effective in my case. I don't get migraines any more, which has been life-changing for me.

I do agree with the sentiment, though, that careful critical appraisal needs to be brought to anything in this field, and any treatment closely monitored. If treatment isn't working, it shouldn't go on, and that's maybe where the problem sometimes lies.

(careful observers may note I'm trying to be a bit more objective about things .... amazing how a good row clarifies the thought processes)
 

mattie

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I would like to know more about the methodology used. I don’t know anything about BCA Augsburg, but I thought the Amin Labs test was intended to be used as a diagnostic tool by physicians, not as a yes/no type test.

So who recommended treatment to these people? Or did the lab actually recommend consulting a physician (which would be a somewhat different thing)?

Also, is BCA Augsburg a lab or a clinic? Or both?

(it's hard to say too much when those of us who don't speak Danish or Dutch can't watch the programme — I grown very wary of television exposé docs after seeing far too many that were incredibly one-sided and dumb, but maybe that's just the UK)
BCA is both a lab and a clinic.
Arminlabs refers patients to a total quack who uses dark-field microscopy test (85% false positive) to confirm Arminlabs diagnosis and than treats with Ozon therapy and antibiotics. His actions are shot with hidden camera in mentioned documentary. You should see his reaction when confronted with the journalists.
 
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mattie

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What about the doctors that order tests from this clinic? After a while of doing that, they must realize that something is wrong when the tests are hardly ever negative. Unless they already believe that almost everyone with various chronic diseases has really a chronic lyme infection. They probably already believe that or they would not be ordering tests from this lab in the first place. This seems to suggest there is a severe deficit of critical thought in this area. Alternatively, that there is no interest in the truth, just in selling products and services to desperate patients.
KDM orders tests from this clinic and told me he came to the conclusion that ME is almost always caused by Borrelia.
Also told me that my LTT score was 100% proof that I have active lyme disease.
However one of the healthy journalists from Denmark had a much higher score on LTT than me.
 
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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.
 
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mrquasar

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I'm a bit skeptical about chronic Lyme too, at least in regards to the current testing and proposed treatments. (A chronic infection is certainly plausible and I am NOT discounting that). I've read too many reports of false positives and stories of people who've spent months or even years on IV antibiotics and not gotten any better. One of these people I know personally. Lately she's been battling constant vomiting and I can't help but wonder if it's from all the antibiotics she's on.

I don't want to discourage people who've been diagnosed with chronic Lyme but that is just what my personal exposure to the issue has been. I'm certainly no expert!
 
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perrier

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Why North America? You think the ELISA or WB are much better?? I have never used the Elispot, but its logical underpinning sounded appealing. So I think one needs to take the good reports with the bad, and do some basic sleuthing and self-interpreting - something I do on a semi-regular basis with the most fundamental Bb test of them all - the western blot.

Welcome to the status quo in Lymeland. Most testing, other than direct testing on a bulls-eye rash, is indirect, and therefore a function of degree. It's ALL imperfect and therefore potentially suspect. Yes, there is PCR testing, but that is like finding a needle in a haystack; one might as well play the lottery.

So, where are the research $'s to build a better Lyme test? This is where one begins to toe the politic's line. BTW, what few $'s are being thrown toward improved Bb diagnostics are almost completely dedicated to EARLY Lyme - I am unaware of anything specific to late stage disseminated. Any one want to hazard a guess as to how many late stage disseminated Lyme patients are out there without a life line?

Edited to add - there is also the direct antigen urine test, but I cannot recall its name at the moment - but it has yet to take off as many had hoped, at least as far as I am aware.
I say North America only because several folks in Canada I know seemed to believe that the Augsburg clinic was the solution. Here in Canada there is practically nothing. This news should be heard in the English speaking world.
Your other points are well taken.
 

duncan

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Also told me that my LTT score was 100% proof that I have active lyme disease.
However one of the healthy journalists from Denmark had a much higher score on LTT than me.
I am always fascinated by reports like this. Excuse this little sidebar:

I like the WB and C6. It has been a long-standing theory that a person infected with Lyme will score positive bands on the WB, and that they may retain those positives. Upon treatment, Lyme values on all the major Lyme indices should decline with successful treatment - BUT, they can still for some hover in positive territory, perhaps for the life of the patient. This doesn't usually happen, but it does happen.

This is not so clear with the C6. The C6 is supposed to decline to normal levels with successful treatment. So, logically, if your values remain elevated, the theory is that you are still infected. But mainstream IDSA proponents will dispute that, even though they cannot adequately explain why or how the C6 remains elevated.

Moreover, my Lyme doctor tells me of positive C6 patients who are asymptomatic - just as he tells me of negative C6 patients who remain symptomatic. It's the positive C6 that make me wonder if that Lyme remains in the patient, but it's not generating symptoms...

...by the same token, could people have Lyme and be asymptomatic, and remain asymptomatic, potentially, all their life, without ever knowing they are infected? If so, what would happen if they got tested for Lyme? Wouldn't they be likely to show a positive?

There are so many unanswered questions re: Lyme. Most people have no idea. A basic question is what is causing persistent symptoms? Is it continued Bb infection? Is it an autoimmune response triggered by Bb and peculiar to Bb? Is it a new disease like ME/CFS? Can you trust your test results? Your clinicians interpretation?

Any patient who contracts Lyme and is not immediately and forever cured will potentially have to contend with these and many, many more questions.
 
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andyguitar

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The epidemioligy evidence for chronic lyme is not good. The tests are crap. Its a con. When it all shakes out we might need to build more jails to stick the fraudsters in. Someone once said 'If you want to make money start a religion'. Yes all that crap worked out well. Seems someone else has decided 'if you want to make money invent an illness'.