Documentary: Undercover in German Lyme Clinics

[Hip]

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.

Even if we assumed a 25% prevalence of Borrelia seropositivity in Lyme endemic areas, then that's still a probably of 25/100 to the power of 11 = 0.00000024 = 1 in 4 million chance of having all 11 members of a family testing positive for Borrelia.

 

[duncan]

I can't do that math, sorry, but I believe you, @Hip. I was just trying to point out that prevelence data that you would think you could rely on, you may not be able to.

This uncertainty isn't arbitrary; there are reasons for it. It is characteristic of the Lyme market.

There are efforts to try to improve diagnostics, but these seem to me in some cases prejudicial or too narrow, in others, nothing short of posturing.

 

[A.B.]

Even if we assumed a 25% prevalence of Borrelia seropositivity in Lyme endemic areas, then that's still a probably of 25/100 to the power of 11 = 0.00000024 = 1 in 4 million chance of having 11 members of a family all testing positive for Borrelia.

Prevalence doesn't say anything how the illness is distributed in the population.

 

[duncan]

You want a good acid test? Look at Bb prevalence and distribution in canines. Vets use the C6, so it's a highly qualified metric - and because it's concerning dogs, people politics is less pronounced.

 

[pibee]

I did approx 2 years orals antibiotics for Lyme. Unfortunately, I can't even say they only made me worse (this would at least be clear enough to never buy into chronic Lyme story). But they did both: got rid of severe neuropathies, facial paralysis, botox-like toxins on my face, many psychiatric symptoms, sleep disorder improved, TMJ improved a lot.

Also, I had very big food intolerances before antibiotics (reactions and high IgG scores), would vomit 4 x a week, even blood, and when I started it very soon I just stopped reacting to all food, and never had better stomach, stopped vomitting completely.


BUT made my ME worse, not much worse but enough (other things even made more damage than antibiotics)...... and gave me nonstop frontal headache.

I had after just few days on doxycycline a severe "herx"; in 2014. Up until then I never took antibiotics in 20 years, maybe even more. Maybe 2 times in life time, 5 days of abx,, tops. And I was very very ill!

So seems like either:
1) i have post-lyme = autoimmunity
2) antibiotics dont work, dont kill persisters, plus cause damage too

 

[duncan]

@pibee, except for some of the incidentals/specifics in your post, your story could be mine - or any other thousands of patients who may have/had Lyme.

 

[pibee]

@pibee, except for some of the incidentals/specifics in your post, your story could be mine - or any other thousands of patients who may have/had Lyme.

I personally see way too many people who never had Lyme, imo, without any specific symptoms, like bells palsy, to be treated for Lyme,, by KDM, or others.
But I cant blame only LLMDs because ME/CFS is not possible to diagnose, now a bit easier, so for me it was either: you're not sick, you are making it up, or you have Lyme.
Of course I chose 2nd.

I think i wasnt wrong, just way too late to treat it like that

 

[Hip]

Prevalence doesn't say anything how the illness is distributed in the population.

Yes prevalence a statistical concept, not a means to determine who has an illness and who doesn't. But you can use prevalence data to calculate the statistical chances that any individual, or any group of individuals for that matter, will have the illness.

 

[A.B.]

Yes prevalence a statistical concept, not a means to determine who has an illness and who doesn't. But you can use prevalence data to calculate the statistical chances that any individual, or any group of individuals for that matter, will have the illness.

The calculation assumes that the illness is randomly distributed in the population, when in reality environmental and genetic risk factors are often important. There was a famous case where a mother was accused of having killed both of her children because based on incidence rates it was assumed that two such deaths would be extremely unlikely to occur in the same family. In reality it's not that uncommon.

Angela Cannings, whose convictions for killing her two sons were overturned in 2003, said she was "disheartened".

During Mrs Clark's original trial, Sir Roy said the probability of two natural unexplained cot deaths in the family was 73 million to one.

The figure was later disputed by the Royal Statistical Society and other experts said that once genetic and environmental factors were taken into consideration, the odds of a second cot death in the same family were closer to 200 to one.

http://news.bbc.co.uk/2/hi/health/4723778.stm

 

[pattismith]

I did approx 2 years orals antibiotics for Lyme. Unfortunately, I can't even say they only made me worse (this would at least be clear enough to never buy into chronic Lyme story). But they did both: got rid of severe neuropathies, facial paralysis, botox-like toxins on my face, many psychiatric symptoms, sleep disorder improved, TMJ improved a lot.

Although, I had very big food intolerances before antibiotics (reactions and high IgG scores), would vomit 4 x a week, even blood, and when I started it very soon I just stopped reacting to all food, and never had better stomach, stopped vomitting completely.


BUT made my ME worse, not much worse but enough (other things even made more damage than antibiotics)...... and gave me nonstop frontal headache.

I had after just few days on doxycycline a severe "herx"; in 2014. Up until then I never took antibiotics in 20 years, maybe even more. Maybe 2 times in life time, 5 days of abx,, tops. And I was very very ill!

So seems like either:
1) i have post-lyme = autoimmunity
2) antibiotics dont work, dont kill persisters, plus cause damage too

Also I had no evidence of being ill with Lyme, I got a similar experience with the antibiotic treatment, with improvements of some symptoms (spinal pains, joint and tendons pains and stiffness in joints and tendons, hypnic jerks), and new symptoms showing up soon after starting treatment, with muscle weakness, increased fatigue and headache, and muscles burning and twitches. Similar side effect as @Vojta .

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

 

[dadouv47]

Lyme specialists in Europe knows about the rate of false positives with the Elispott (which is unfortunately still the only relatively ''good'' test we have). KDM himself told me about that study or some similar that showed a high % of positive tests among healthy people. That's probably why him (and maybe others) specialists are more cautious those last years to treat patients with positive results (I had a 5-3-1 score and he only treats me for post lyme disease without giving me any abx for Lyme, focusing on my gut). Before treating a patient with Lyme disease, they take into account many other blood tests measures (low CD57) and clinical symptoms as well.

Several former KDM patients here got worse because he immediately put them on abx for Lyme. I don't see a lot of patients (diagnosed with CFS) getting treatment for active Lyme recently. I don't know if that's an improvement or not, but he clearly changed the way he looked at Lyme in his patients.

Overall, I think it's very bad to try to diminish how bad Lyme disease is and how frequent it is, even if I can agree with a lot of people saying that both diagnosis tests and treatments protocols are REALLY bad (which should be a reason to try to help recognize this disease and get funds for research, not to bash Lyme sufferers).

 

[mrquasar]

they have in the past attempted to silence critics.

Attempting to silence critics? On Phoenix Rising? Why I never!...<insert massive sarcasm here>

 

[dadouv47]

Even if we assumed a 25% prevalence of Borrelia seropositivity in Lyme endemic areas, then that's still a probably of 25/100 to the power of 11 = 0.00000024 = 1 in 4 million chance of having all 11 members of a family testing positive for Borrelia.

I don't think that's an accurate estimation. I have to say it's pretty crazy/weird that 11 members of a family could have Lyme disease, but it's pretty common to see a couple with children where both children and at least one parent (the mother in the most cases I believe) have Lyme. We don't know for sure if Lyme can be sexually transmitted, but we do know that a mother can transmit it to her child. Family members can also be exposed to the same risk factor (animals with ticks).

Not saying that that family really have 11 cases of Lyme (I don't know anything about their story), but it's not that easy to calculate the odds of all of them having Lyme disease

 

[mrquasar]

Even if we assumed a 25% prevalence of Borrelia seropositivity in Lyme endemic areas, then that's still a probably of 25/100 to the power of 11 = 0.00000024 = 1 in 4 million chance of having all 11 members of a family testing positive for Borrelia.

Unless they picnicked together in a particularly tic-infested spot. That is, assuming tics have nests where they cluster. I have no idea if this is the case, just throwing the idea out there. I'm sure you could find a a spot in the forest with 11 infected tics, no?

 

[Hip]

The calculation assumes that the illness is randomly distributed in the population, when in reality environmental and genetic risk factors are often important.

Agreed, and if for example Caudwell and his family all happened to live next to a large herd of deer all carrying Lyme disease ticks, that could increase their Lyme risk. But for the average family of 11, it's still around a 38 billion to 1 chance that they would all have Borrelia.

And again, if we look at the story posted by @mattie at the beginning of this thread, where he says:

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.

What are the chances of these random, genetically unrelated individuals all having Borrelia? Again, if we use the 10.9% figure for the prevalence in a Lyme endemic area (and these journalists and TV personalities may not even live in an endemic area), and just as a guess we can say there were 7 people in total who were tested (@mattie does not state the exact number), the chances of them all having Lyme are:

(10.9/100)^7 = 0.00000018 = 5 million to 1 against. That is to say, it is extremely improbable that all these journalists and TV personalities would all be positive for Lyme.

Starting to see a pattern here with Armin's tests?

 

[Mel9]

Antibiotics help me have an almost normal life: Relief from joint pain, IBS severe brain fog and ACA rashes. The antibiotics allow me to be able to walk normally again.

If I forget to take the antibiotics I soon get a relapse so it seems that the Borrelia bacteria have not been completely wiped out. Maybe never will be.

 

[dadouv47]

Agreed, and if for example Caudwell and his family all happened to live next to a large herd of deer all carrying Lyme disease ticks, that could increase their Lyme risk. But for the average family of 11, it's still around a 38 billion to 1 chance that they would all have Borrelia.

And again, if we look at the story posted by @mattie at the beginning of this thread, where he says:


What are the chances of these random, genetically unrelated individuals all having Borrelia? Again, if we use the 10.9% prevalence figure for the prevalence in a Lyme endemic area (and these journalists and TV personalities may not even live in an endemic area), and just as a guess we can say there were 7 people in total who were tested (@mattie does not state the exact number), the chances of them all having Lyme are:

(10.9/100)^7 = 0.00000018 = 5 million to 1 against. That is to say, it is extremely improbable that all these journalists and TV personalities would all be positive for Lyme.

Starting to see a pattern here with Armin's tests?

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.

We clearly hope some more reliable tests will be available

 

[Orla]

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.

It has never been mentioned to us at the vet (they do recommend dosing with a preventative medicine for various insects and worms, but we don't always do it, or do it regularly enough so that they don't get bitten). I would often speak to pet owners and none of them have ever mentioned their pet having Lyme.

I get the impression sometimes that some people seem to almost think that getting bitten at all is a big risk for Lyme and something to panic about. Now obviously it is not ideal to be bitten, just in case, but I used to get bitten all the time when I was younger and I don't think I ever got sick from it. I get bitten now occasionally and never feel worse from it.

Surely if Lyme were a major cause of ME-type symptoms the prevalence would be very different, with mostly farmers and outdoor workers getting sick and not teachers and nurses?

I think there are probably some cases of ME-type symptoms who have Lyme disease, but I wouldn't trust the tests out there. Thanks @Hip for the information on Cocksakie virus.

 

[A.B.]

Yes, please don't bash me. Antibiotics help me have an amost normal life: Relief from joint pain, IBS severe brain fog and ACA rashes. The antibiotics allow me to be able to walk normally again.

If I forget to take the antibiotics I soon get a relapse so it seems that the Borrelia bacteria have not been completely wiped out. Maybe never will be.

That alone doesn't mean you have lyme disease. Many medications have multiple effects in the body.

 

[dadouv47]

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.

It has never been mentioned to us at the vet (they do recommend dosing with a preventative medicine for various insects and worms, but we don't always do it, or do it regularly enough so that they don't get bitten). I would often speak to pet owners and none of them have ever mentioned their pet having Lyme.

I get the impression sometimes that some people seem to almost think that getting bitten at all is a big risk for Lyme and something to panic about. Now obviously it is not ideal to be bitten, just in case, but I used to get bitten all the time when I was younger and I don't think I ever got sick from it. I get bitten now occasionally and never feel worse from it.

Surely if Lyme were a major cause of ME-type symptoms the prevalence would be very different, with mostly farmers and outdoor workers getting sick and not teachers and nurses?

I think there are probably some cases of ME-type symptoms who have Lyme disease, but I wouldn't trust the tests out there. Thanks @Hip for the information on Cocksakie virus.

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).