Documentary: Undercover in German Lyme Clinics

[andyguitar]

The patients have an illness. As the tests are crap there is no scientific evidence that can be obtained from them that proves that an infection caused by a tick bite is the cause of that illness. Nor is there any other scientific evidence that Lyme or any other tick related infection causes the symptoms claimed. To obtain such evidence a subject needs to be infected with Lyme disease and subjected to a range of laboratory tests. If those who are supposed to have chronic lyme actually had it then they would respond to the standard antibiotic treatment within a month or so. What do we see instead? Treatment going on for years. Huge sums of money being taken from the sick by a bunch of crooks.

 

[duncan]

If those who are supposed to have chronic lyme actually had it then they would respond to the standard antibiotic treatment within a month or so.

That is not necessarily true, and that is the crux of one of the ongoing problems with Lyme. Even historic and incredibly conservative IDSA research suggests one in five people verified with Lyme will see standard abx protocols fail them.

 

[duncan]

As the tests are crap there is no scientific evidence that can be obtained from them that proves that an infection caused by a tick bite is the cause of that illness

This is also inaccurate. Even crap tests can sometimes provide good evidence. The western blot is a case in point.

 

[mrquasar]

Even crap tests can sometimes provide good evidence.

How?

one in five people verified with Lyme will see standard abx protocols fail them.

But the crux of the issue is how are they "verified" to have Lyme? If the tests are not accurate then the whole house of cards comes crashing down.

 

[duncan]

How?

CDC and IDSA criteria for WB interpretation is based on an algorithm. Part of that are reactive bands that are specific to Bb. So, even though the WB has obvious weaknesses, if you accept that algorithm at face value, you've an acceptable metric or piece of evidence. If you do not like the algorithm, you still can walk away with evidence based on the nature of the bands. Ultimately, these are only evidence of exposure, but because of the limitations inherent in today's crop of Bb metrics, you "prove" a case of active Lyme almost like one does a court case without a reliable eye-witness.

But the crux of the issue is how are they "verified" to have Lyme? If the tests are not accurate then the whole house of cards comes crashing down.

This is a good point, and is often used against the IDSA and its frequently circular logic. Still, if I recall, early Lyme research used direct testing or confirmed EM to validate. These I believe were small cohorts in the 80's, but I think much of the one-in-five ratios are rooted there, and then were reinforced via the indirect tests thru the 90's.

Incidentally, the range typically referenced for Lyme cases left unresolved after standard abx treatment is 10-20%. ILADS suggests this is LOW. Within IDSA ranks, my understanding is there is a currently revisionist movement to drop the reference to up to 5%; I am unsure how much traction that movement has achieved so far.

 

[andyguitar]

Cant see that what the CDC, IDSA, and WB have to say about lyme is of any value. Not done to good when it comes to ME have they? Total cock up.

 

[Vojta]

I'm glad somebody finally exposed this scam. Too late for me as I have already been damaged by wrong diagnosis by KDM and treatment with long term antibiotics too.
It was suspicious that from certain point basically everybody tested positive on these tests. I remember that when I was at clinic I talked to couple where healthy spouse got tested and he was positive too.

I visited BCA in 2012 and my first LTT was negative for everything. When I asked if they treated people with antibiotics who had negative LTT like me doctor said yes and they would be willing to "treat me". I escaped there but unfortunatelly KDM went into his "CFS=LYME" stage and he destroyed me with antibiotics later and didn't care for side effects and toxicity.
After I got permanently much more sick with many new symptomes (including ruined gut), LTT was sudenlly very high positive (I was mostly bedbound in the meantime), so I got even more antibiotics and got even more damaged. And again after that LTT was even higher... I should have trusted myself from the beggining but antibiotics caused such neurocognitive impairment (which was immediately dissmised by KDM as "herx") which made me unable to think, reasearch or make any decision. It was huge mistake to trust KDM. Later I saw how he is obsessed with lyme and how he tried to fit everything to his "lyme theory" and I'm seriously worried that some of his patients will suffer like me in agony for the rest of their lives or die because of his mistreatment.

 

[Inara]

The whole chronic lyme thing is a scam, or a delusion. Apologies if feelings are hurt by this.

Would you be willing to share your reasons?

I didn't go into that topic too deep, but I often had the feeling there is something about it...without being able to point at it.

 

[Inara]

What about Lyme infection without symptoms? A test would be positive, then, wouldn't it?

I am just trying to understand and to gather information. There's not an opinion it that.

 

[perrier]

I'm glad somebody finally exposed this scam. Too late for me as I have already been damaged by wrong diagnosis by KDM and treatment with long term antibiotics too.
It was suspicious that from certain point basically everybody tested positive on these tests. I remember that when I was at clinic I talked to couple where healthy spouse got tested and he was positive too.

I visited BCA in 2012 and my first LTT was negative for everything. When I asked if they treated people with antibiotics who had negative LTT like me doctor said yes and they would be willing to "treat me". I escaped there but unfortunatelly KDM went into his "CFS=LYME" stage and he destroyed me with antibiotics later and didn't care for side effects and toxicity.
After I got permanently much more sick with many new symptomes (including ruined gut), LTT was sudenlly very high positive (I was mostly bedbound in the meantime), so I got even more antibiotics and got even more damaged. And again after that LTT was even higher... I should have trusted myself from the beggining but antibiotics caused such neurocognitive impairment (which was immediately dissmised by KDM as "herx") which made me unable to think, reasearch or make any decision. It was huge mistake to trust KDM. Later I saw how he is obsessed with lyme and how he tried to fit everything to his "lyme theory" and I'm seriously worried that some of his patients will suffer like me in agony for the rest of their lives or die because of his mistreatment.

Vojta, Thank you. I'm so sorry. In time I'm hopeful you can heal. We missed this by a hair's breath. I even spoke to the doctor there. Fortunately, we didn't get good vibes from KDM and escaped him after much suffering ( and seeing him in two trips) and little to no help.

 

[duncan]

What about Lyme infection without symptoms? A test would be positive, then, wouldn't it?

Not necessarily, and there are a few reasons that come readily to mind. First, you might have a strain not picked up by a given test. Second, your immune system may be compromised and cannot mount enough of a response to generate a positive. Third, the Lyme spirochetes may be able to fool your immune system. Each of these situations has been documented in some patients.

 

[A.B.]

Would you be willing to share your reasons?

I didn't go into that topic too deep, but I often had the feeling there is something about it...without being able to point at it.

The signal/noise ratio by proponents of this idea is low. Signal would be convincing studies, good methodology, reproducibility, ethical behaviour. Noise would be hearsay, unreproducible studies, unreliable tests, bold claims unsupported by evidence and so on.

If they were fundamentally correct I think they would be able to convince the majority of doctors. That hasn't happened and they come up with interesting justifications for this.

I also made the mistake of seeing such a doctor myself and suffered from side effects and learned a valuable lesson from that. I think the doctors that are into this are either naive and incompetent or crooks. There might be a kernel of truth in the idea of chronic lyme infection as in many controversial ideas, but it has gotten out of control, with clear harm to patients.

This forum also has a few users who are very much invested into the chronic lyme idea and they have in the past attempted to silence critics.

 

[duncan]

The signal/noise ratio by proponents of this idea is low. Signal would be convincing studies, good methodology, reproducibility, ethical behaviour. Noise would be hearsay, unreproducible studies, unreliable tests, bold claims unsupported by evidence and so on.

Could you clarify whether you are talking about the idea of Lyme disease that can become chronic, or rather divergent treatments for persistent Lyme that may be causing harm in patients?

If you do not believe in the idea or concept of chronic Lyme, do you believe in Lyme that is refractory to standard treatment? If you do not believe even in this, then you run counter to ALL Lyme literature, including the most conservative.

 

[Inara]

The signal/noise ratio by proponents of this idea is low. Signal would be convincing studies, good methodology, reproducibility, ethical behaviour. Noise would be hearsay, unreproducible studies, unreliable tests, bold claims unsupported by evidence and so on.

This describes exactly the feeling I mean, the thing I can't point at.

Doctors aren't convinced about ME although, as I see it, there is evidence (lots of...). Most doctors are a little...slow.

There might be a kernel of truth in the idea of chronic lyme infection as in many controversial ideas, but it has gotten out of control, with clear harm to patients.
[\QUOTE]

I agree. For me, it's somehow hard to grab.

thanks to everyone

 

[duncan]

The signal/noise ratio by proponents of this idea is low. Signal would be convincing studies, good methodology, reproducibility, ethical behaviour. Noise would be hearsay, unreproducible studies, unreliable tests, bold claims unsupported by evidence and so on.

This looks good on paper, but I fear it may not reflect a thorough appreciation of the way Lyme research and mainstream dogma has evolved. It has been a process characterized by medical politics, with a few controlling where research $'s went, and in which directions.

Ironically, your observation/condemnation can apply to both sides of the Lyme aisle, i,e., the signal/noise ratio by proponents that chronic Lyme doesn't exist is low, and most recent research suggest is falling lower.

 

[Hip]

What put me off Armin's lab is his deceptive coxsackievirus test.

On the ArminLabs website, he describes this as a coxsackievirus A and B antibody test. Now there are six coxsackievirus B serotypes, and dozens of coxsackievirus A serotypes. It is the coxsackievirus B serotypes that are linked to ME/CFS, so these CVB serotypes are important to test for in anyone who has ME/CFS-like symptoms.

All the coxsackievirus B lab tests I have ever seen will test for all six CVB serotypes (CVB1 to CVB6). However, Armin's test only tests for CVB1 (which just on its own is quite useless really, and a complete waste of money). Yet nowhere on his website, nor on the ArminLabs coxsackievirus test results page, does it mention that his test only detects CVB1, and ignores CVB2 to CVB6.

So patients will take his coxsackievirus test thinking it tests for the full range of CVB serotypes, but it neglects to test for CVB2 to CVB6. More info on this very confused situation in this post.


If that's how ArminLabs treats coxsackievirus testing, it does not bode well for the Lyme tests his lab provides.

 

[duncan]

This forum also has a few users who are very much invested into the chronic lyme idea and they have in the past attempted to silence critics.

 

[Hip]

I also think alarms bells should have sounded when Armin's tests found 11 members of John Caudwell's family positive for Lyme (Caudwell is the philanthropic Phones4U billionaire). Ref: here.

It is pretty improbable that an entire family of 11 are all positive for Borrelia, so you know something must be wrong with Armin's Lyme tests. Borrelia is not contagious by normal social contact (although there is some evidence it might be contagious through unprotected sexual contact), so it is very unlikely to find a whole family of 11 infected.

Even in a Lyme endemic area, studies have shown that the prevalence of Borrelia seropositivity is only 10.9%. So the chances of 11 members of his family all testing positive for Borrelia can be calculated at 10.9/100 to the power of 11 = 0.000000000026, which is around a likelihood of 38 billion to 1 against. In other words a vanishingly small probability.



A while ago I contacted John Caudwell through his Facebook page to (tactfully) point out that these 11 positive Lyme tests from ArminLabs could well be wrong, and suggested that he test for active infections of other pathogens linked to Lyme-like and ME/CFS-like symptoms, such as coxsackievirus B, because I don't think the results from ArminLabs can be relied on. But unfortunately I did not receive any reply, so I am not sure if saw my message.

Caudwell's philanthropic activities in setting up a Lyme disease charity to raise awareness of this disease are very commendable. But given he uses ArminLabs for his testing, whether he and his family actually have chronic Lyme is another matter.

 

[duncan]

Even in a Lyme endemic area, studies have shown that the prevalence of Borrelia seropositivity is only 10.9%. So the chances of 11 members of his family all testing positive for Borrelia can be calculated at 10.9/100 to the power of 11 = 0.000000000026, which is around a likelihood of 38 billion to 1 against. In other words a vanishingly small probability.

Maybe, but remember the circular reasoning issue, that is, if the tests employed suck, you can pretty much put an asterisk next to the study's findings. Your study was in Wisconsin so they would have used ELISA/Western blot and the CDC criteria - there are many that believe those criteria are too stringent and omit too many cases on that basis alone (and that doesn't even take into account missed strains/species). Edited to add - it's even worse than that: Evidentally they only used the ELISA.

Lyme is a mess. We see people taking sides based on filtered data. The whole thing is a mess, and the bottom line is no one knows what's going on other than Bb is real and potentially dangerous.

 

[keenly]

The whole chronic lyme thing is a scam, or a delusion. Apologies if feelings are hurt by this.

NO, lyme is a man made problem, and very real.