Documentary: Undercover in German Lyme Clinics

[barbc56]

Here’s a good source.

https://sciencebasedmedicine.org/chronic-lyme-disease-another-negative-study/

 

[pibee]

What kind of side effects did you have? (what kind of "heirx" if you prefer?)

In 2014, exactly 3 years ago now, after few days of doxycycline (after being symptomatic since childhood and didnt take any antibiotics that I'm aware of since i was 10, and before that also almost none), I had severe herx --- it was like someone throw me against the wall, from 5 meters, I got twitches in my muscles, electricity through spine, severe arhtritis in my knees, rages, headache, fibro (first time in life), burning all over skin. All my muscles were twitching nonstop.

Most of those things went away except constant frontal headache - 24/7 for 2years. Stabs through head..
some cognitive symptoms improved but overall I'm worse because of worsening of CFS (my guess)

It seems it was genuine book case Herxheimer but unfortunately the killing just flared autoimmunity, and then I wasnt aware of ME/CFS even. Now when I tested CellTrend it is very high , 8/9 positive. I dont know what would it be like then, but probably also high because I have 20 years of CFS symptoms.

 

[Orla]

That's not most vets opinion on this. Some of them are VERY active trying to help for Lyme disease to be recognized. They know how dangerous it is and a lot of them are supporting Lyme disease sufferers way more than most Doctors do. Many vets accepts human blood tests to do their borrelia test (instead of doing some Elisa/Western blood crappy test).

It could be an issue is some areas bit I am not convinced it is in all. None of our pets have ever had an unexplained illness, and I can't think of anyone who I know whose pet had an unexplained illness either.

 

[Hip]

We all know Armin tests have way too many false positives (taking some humain protein into account), but I never saw an ILADS specialist giving a heavy treatment for Lyme without other blood tests and clinical symptoms indicating Lyme disease.

It's not just an inappropriate antibiotic treatment that is the issue; it's the fact that a these apparently numerous false positive Lyme test results might discourage a patient with ME/CFS-like symptoms from testing for other ME/CFS-associated pathogens. John Caudwell appears convinced he and his family all have Lyme, on the basis of ArminLabs tests.

But what if his family's symptoms are caused by coxsackievirus B or echovirus, other by any of the other viruses linked to ME/CFS? Has he actually tested himself and his family for these other infectious agents? That's what I wrote to him about. If he says many of his family are displaying symptoms, then something like coxsackievirus B (which does easy transmit to other people by normal social contact) makes a lot more sense as an explanatory cause of those symptoms.

 

[pattismith]

In 2014, exactly 3 years ago now, after few days of doxycycline (after being symptomatic since childhood and didnt take any antibiotics that I'm aware of since i was 10, and before that also almost none), I had severe herx --- it was like someone throw me against the wall, from 5 meters, I got twitches in my muscles, electricity through spine, severe arhtritis in my knees, rages, headache, fibro (first time in life), burning all over skin. All my muscles were twitching nonstop.

Most of those things went away except constant frontal headache - 24/7 for 2years. Stabs through head..
some cognitive symptoms improved but overall I'm worse because of worsening of CFS (my guess)

It seems it was genuine book case Herxheimer but unfortunately the killing just flared autoimmunity, and then I wasnt aware of ME/CFS even. Now when I tested CellTrend it is very high , 8/9 positive. I dont know what would it be like then, but probably also high because I have 20 years of CFS symptoms.

you say that most of these bad reactions disappear. Did they disappear while your treatment was still going on or after you stopped it? How long did you take Doxy?
I was 4 months under Azythro and Doxy and I had to stop all because of this kind of reaction, and some of the symptoms are still present now (5 months after I stopped).

(hopefully the supplements I take now help me to manage it to a certain extend)

 

[dadouv47]

It's not just an inappropriate antibiotic treatment that is the issue; it's the fact that a these apparently numerous false positive Lyme test results might discourage a patient with ME/CFS-like symptoms from testing for other ME/CFS-associated pathogens. John Caudwell appears convinced he and his family all have Lyme, on the basis of ArminLabs tests.

But what if his ME/CFS-like symptoms are caused by coxsackievirus B or echovirus, other by any of the other viruses linked to ME/CFS? Has he actually tested himself and his family for these other infectious agents? That's what I wrote to him about. If he says many of his family are displaying symptoms, then something like coxsackievirus B (which does easy transmit to other people by normal social contact) makes a lot more sense as an explanatory cause of those symptoms.

Okay so you are pointing out a mistake made by a individual. You don't show any evidence that some infectious disease specialist (or Lyme specialist following ILADS guidelines) is doing that kind of mistake. Obviously I agree with what you are saying (that's not answering to what I was pointing out).

 

[pibee]

@pattismith , honestly I have no idea why they disappeared, usually it was after I switched to new antibiotic that 'worked', so they went away.
I think what abx flared (and other treatments, i dont atribute my worsening of CFS to abx only!), is autoimmunity -ANS problems - wehn i took recently propanolol I felt like before abx at my best, when i wasnt aware of pulse issues, they were so mild.. (+ benefits of what they improved).

This summer I've got IV ceftriaxone (for nothing related to Lyme, i didnt even expect it to help ) 2 weeks and within 24 hours I was 80% better. This is why especially was shocking that I have CellTrend so high, because when i responded so well to ceftriaxone (I felt best in maybe 15 years even ), I just thought.. thank god, it's lyme after all.

I stopped it because bad veins, and then got problems again. Went from walking 5 km a day, to barely leaving house, within 10 days of stopping IV ceftraixone.

But it can also work on glutamate functions in brains, maybe it was that. :/

 

[dadouv47]

Here’s a good source.

https://sciencebasedmedicine.org/chronic-lyme-disease-another-negative-study/

The article is well written and there are a lot of truths, but like always they try to choose a side by not mentioning something important : many specialists are between the ''you are seropositive if you have Chronic Lyme'' and ''You have to take abx for Chronic Lyme''. A lot of them are trying to fix issues that were triggered by Lyme disease (that's why they call it Post-Lyme disease). They are not trying to treat you for Lyme with heavy abx. They are trying to treat you from the consequences of the borrelia infection (leaky gut or whatever issue you can have). Are they right? I don't know, but they should have put it into their article to be fair.

 

[pattismith]

This summer I've got IV ceftriaxone (for nothing related to Lyme, i didnt even expect it to help ) 2 weeks and within 24 hours I was 80% better. This is why especially was shocking that I have CellTrend so high, because when i responded so well to ceftriaxone (I felt best in maybe 15 years even ), I just thought.. thank god, it's lyme after all.

I stopped it because bad veins, and then got problems again. Went from walking 5 km a day, to barely leaving house, within 10 days of stopping IV ceftraixone.

But it can also work on glutamate functions in brains, maybe it was that. :/

This is really interesting! Thank you for sharing

 

[duncan]

But what if his ME/CFS-like symptoms are caused by coxsackievirus B or echovirus, other by any of the other viruses linked to ME/CFS? Has he actually tested himself and his family for these other infectious agents? That's what I wrote to him about. If he says many of his family are displaying symptoms, then something like coxsackievirus B (which does easy transmit to other people by normal social contact) makes a lot more sense as an explanatory cause of those symptoms.

This is a reasonable suggestion. As too may be EBV, or a herpes virus. Maybe the collection of symptoms that we label as ME/CFS is really the product of any one of several infections? This is also a theory for MS, as we all know. Just as we KNOW Lyme CAN be chronic and it CAN and DOES kill, as with Vickie Logan and many others.

Nevertheless, the point I have been trying to hammer home is that both mainstream Lyme testing and alternative Lyme testing STINK. Irrespective of that, we KNOW that Lyme is spreading if only because of things like the EM and tick testing and evidence in pets and other hosts.

So, when one of these gotcha moments surface that seem to belie the integrity of a given diagnositic, many long-timers within the Lyme community say "Take it in stride, because we should be used to diagnositc disappointments,and we mustn't let that deter us from stemming this hemorraging of Lyme cases." Moreover, if anyone wants to indulge in fingerpointing, you better well start back in the 1970's and include the CDC and the NIH and keep pointing until October 2017.

 

[Hip]

You don't show any evidence that some infectious disease specialist (or Lyme specialist following ILADS guidelines) is doing that kind of mistake.

I am not familiar with the exact diagnostic procedure that Lyme specialists follow, and I don't know whether or not Lyme specialists will routinely test for the various other infections that can cause ME/CFS-like symptoms, in order to rule out other infectious causes.

However, I cannot see the point in any Lyme specialist using a test that apparently comes out positive for nearly everyone. If we assume the 10.9% prevalence of Borrelia seropositivity, then out of those ~7 journalists and TV personalities who were tested at ArminLabs, you would typically expect perhaps 1 of them to be positive; but not all of them.

So why use a test if it comes out positive for nearly everyone? That test really tells you nothing, and can only serve to create confusion.

 

[pibee]

It's not just an inappropriate antibiotic treatment that is the issue; it's the fact that a these apparently numerous false positive Lyme test results might discourage a patient with ME/CFS-like symptoms from testing for other ME/CFS-associated pathogens. John Caudwell appears convinced he and his family all have Lyme, on the basis of ArminLabs tests.

But what if his ME/CFS-like symptoms are caused by coxsackievirus B or echovirus, other by any of the other viruses linked to ME/CFS? Has he actually tested himself and his family for these other infectious agents? That's what I wrote to him about. If he says many of his family are displaying symptoms, then something like coxsackievirus B (which does easy transmit to other people by normal social contact) makes a lot more sense as an explanatory cause of those symptoms.

Caudwell's son doesn't really have ME symptoms it seems, but big psychiatric problems as primary, extreme agoraphobia, panic attacks, social phobia, paranoia.

We can't just assume everybody with chronic Lyme diagnosis fits ME either. I was thinking about this a lot last 3 years when speaking to hunderds of Lyme people who are not 'into' ME.. maybe 20-30% fit ME diagnosis. I always wondered why is my fatigue so dominant, and rarely comparable with theirs.
(But also I was longest sick of most of them, which is a factor too).




All this discussion would be much more useful if we actually know how Arminlab determines his cut off ref range 2.00 ? it should be that 95% people fall in < 2 category. In this case 'many' false positives, is just wrong to say.

Why doesnt anyone simply ask Armin why he put ref range 2 or 3.

 

[Inara]

One flaw I think in the Lyme disease theory is that there doesn't seem to be an epidemic of animals getting it. I am talking about pets here, who might be regularly exposed to ticks and who has owners who would notice if they were sick.

That was actually what I was wondering about when I had a dog - and she got LOTS of tick bites. All the approximately 20 dogs got tick bites regularly. They never got sick. I was always wondering what is different there.

 

[dadouv47]

Caudwell's son doesn't really have ME symptoms it seems, but big psychiatric problems as primary, extreme agoraphobia, panic attacks, social phobia, paranoia.

We can't just assume everybody with chronic Lyme diagnosis fits ME either. I was thinking about this a lot last 3 years when speaking to hunderds of Lyme people who are not 'into' ME.. maybe 20-30% fit ME diagnosis. I always wondered why is my fatigue so dominant, and rarely comparable with theirs.
(But also I was longest sick of most of them, which is a factor too).




All this discussion would be much more useful if we actually know how Arminlab determines his cut off ref range 2.00 ? it should be that 95% people fall in < 2 category. In this case 'many' false positives, is just wrong to say.

Why doesnt anyone simply ask Armin why he put ref range 2 or 3.

That's the most important aspect of it. And it partially answer to your question @Hip. Good Lyme specialists still use the Elispott because he's still one of the best in Europe (or ''less bad'') but they know that borderline positive results are not reliable.

 

[eva luna]

There has been a lot of criticism against the Danish undercover documentary. Some Danish patients have made their own reply to the documentary, with the title 'Something is rotten in the state of Denmark' because they found there were too much things untrue: https://www.youtube.com/watch?v=mtsQra8nXcA

Difficult to know what to believe, if you ask me...

 

[barbc56]

An improvement in symptoms when taking an antibiotic may be due to the fact that abxs reduce inflammation.

This does not mean lime doesn’t exist but may explain why some people report symptom relief.

 

[duncan]

That was actually what I was wondering about when I had a dog - and she got LOTS of tick bites. All the approximately 20 dogs got tick bites regularly. They never got sick. I was always wondering what is different there./QUOTE]

Not much. Dogs just might not show it like we do unless it's in their joints. I suspect that like humans, Lyme in joints in dogs may not be as common as some think. I'd also wager that neuroLyme is frequent in dogs, only there isn't a lot of canine cognitive testing. Most countries use the C6 to test dogs, and most countries have accessible records where dogs have tested positive, This is also true in the US, and the US canine Lyme incidence map contradicts much of what the CDC says relative to humans.

 

[Mel9]

An improvement in symptoms when taking an antibiotic may be due to the fact that abxs reduce inflammation.

This does not mean lime doesn’t exist but may explain why some people report symptom relief.

But this does not explain why the rashes cleared up

 

[Hip]

Caudwell's son doesn't really have ME symptoms it seems, but big psychiatric problems as primary, extreme agoraphobia, panic attacks, social phobia, paranoia.

Indeed, and these were the type of psychiatric symptoms I myself developed in 2003, when I was infected by a virus (whose symptoms and my blood tests suggest might be coxsackievirus B4). Several friends who caught the same virus from me also rapidly developed similar symptoms, so it was clear that my virus had strong neurological effects that can cause some severe mental symptoms.

I only developed ME/CFS from the virus a bit later; but my first virally-triggered symptoms were generalized anxiety disorder with some mild psychosis, anhedonia, social withdrawal, emotional frailty, blunted emotions.

I pointed John Caudwell to my website here, which describes the symptoms produced by my virus, as I thought my virus could well be the same pathogen that infected his family.

Caudwell mentions that his family developed several types of illness, ranging from anxiety to thyroid problems, though these illnesses are manageable, not severe conditions like his son Rufus unfortunately suffered from. As well as triggering moderate to severe generalized anxiety disorder in several people, my virus also seemed to precipitate thyroid problems: out of around 30 or people who caught my virus, 2 developed hypothyroidism within a few years.

 

[Hip]

But to respond to my own comment:

However, I cannot see the point in any Lyme specialist using a test that apparently comes out positive for nearly everyone.

Perhaps the utility of the Arminlabs Lyme test that usually come out positive is this: if a doctor wants to try a long-term course of antibiotics on suspected Lyme patient (who may or may not have Lyme), but has no rationale for doing so, say because CDC-recognized Lyme tests came out negative (and thus perhaps insurance will not cover the cost of the antibiotics), then a positive result from Arminlabs might be useful for insurance coverage reasons.