One million cases LymeBorreliosis Germany 2012

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inmacdonald
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Re: One million cases LymeBorreliosis Germany 2012

Post by inmacdonald » Thu 24 Jan 2013 14:37

One Million cases in Germany puts the Collective individual country by country Lyme experiences
to a very far Distant SECOND.


The German National collective experience - ONE MILLION LYME BORRELIOSIS CASES-
places Germany in unrivaled FIRST PLACE.

Reflect this statistic with the United Kingdom Collective Experience in Lyme Borreliosis case numbers
and you will clearly see the effect of Bureaucratic Suppression of Lyme Borreliosis case
identification and central registry reporting.


Shame on Dr Susan OConnelll and all of her successors. A great disservice to the people of England,
Scotland, Ireland, and Wales.


Alan MacDonald MD
Jan 24,2013

RobertF
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Re: One million cases LymeBorreliosis Germany 2012

Post by RobertF » Thu 24 Jan 2013 17:04

The official nummbers from the Robert Koch Institute are 60.000 cases a year. The milj number is calcutated from the insurance comp. from people diagnosed with Lyme.
So, in Germany the figures are hided also.

In a petition to the Dutch governement we asked to make Lyme disease a notofiable disease, so that we know what we are taking about.

They donot want figures , they donot want real numbers and that's why our request was rejected. although 75.000 people signed the petition.

hv808ct
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Re: One million cases LymeBorreliosis Germany 2012

Post by hv808ct » Thu 24 Jan 2013 23:06

by inmacdonald » Wed 23 Jan 2013 18:29
One million cases LymeBorreliosis Germany 2012
viewtopic.php?f=6&t=4471

Dear Tosho,
I will accept your apology.
Thank you for raising the question.
Best,
Alan
by tosho » Thu 24 Jan 2013 1:20
Doctor,
I don't see a reason to apology
Indeed. I won’t apologize to this arrogant troglodyte either.

First, it’s hard to know exactly what is meant by “one million cases of Lyme borreliosis” in 2012. Clearly, it cannot mean 1M confirmed cases of borreliosis. There just aren’t that many Germans rolling around in the grass in a given year. It may mean assumed cases. It may mean tests conducted to confirm or exclude LD. In the U.S. there is a huge amount of over-testing (and billing): done in order to reassure patients (and malpractice insurers). Looking at the dollar cost of LD testing and the number of annual tests in the U.S. one would guess the U.S. was in the midst of a massive epidemic of tick-borne infections. (We’re not, of course, since LD is an antibiotic-responsive, non- communicable, non-fatal bacteria infection limited by geography and seasonality.) On a lark, I once contributed to this cost and excess testing by having myself tested based on my N.E. residency. Came back negative: no IgM or IgG. So it’s hard to believe there are 1M confirmed cases of LD in Germany. I think such a huge number might have attracted the attention of WHO and ProMED. It hasn’t.

Second, I never had occasion to read “Cure Unknown” because generally I am not interested in the views of pundits with axes to grind. Thanks to Google, however, I did stumble across a search engine for the book and typed in MacDonald’s name. (http://books.google.com/books?id=YVqgBT ... =macdonald)

Now the author clearly intended for the book to present a view of heroic, lone physicians and suffering patients fighting against the arrogant, entrenched mass of modern medicine. And those who bought the book probably read it that way. Yet, it’s very easy to read it from an entirely different perspective: that of lone amateurs trying to attract the attention of famous researchers and institutions with wild theories and claims, and being rebuffed for lack of compelling evidence. The histories of medicine and science are crowded with such wild-eyed individuals, who, in the era of the Internet, have found a home and an audience, albeit outside the preferred domains of medicine and science.

That’s how I read MacDonald’s involvement in LD: an obscure pathologist with no ID training sitting in a hospital basement looking at slices of liver biopsies. Suddenly he’s asked to take some photos of something and thinks he’s discovered something extraordinary. He hasn’t.

From the book:

“MacDonald felt excited to be at the epicenter of an emerging infectious disease, and had been thrilled when contacted by Jorge Benach, by then officially at Tony Brook, to track down Lyme.”

“…MacDonald was also able to see the odd forms under his darkfield scope. These were indeed the spirochetes, MacDonald guessed, but in altered form. The cysts, especially, tantalized him: Could the hardened walls be protecting the Borrelia under adverse conditions (like antibiotic treatment) only to dissolve when the adversity was gone, permitting the patient to relapse? …he boarded a plane for Vienna and the Second International Symposium on Lyme Disease and Related Disorders in September [1985], he had a hundred slides of fetal tissue that had fluoresced with special dye or revealed strange forms under the darkfield, all of them suggestive, to him, of borrelial infection in the womb.”

“At the conference MacDonald took no more than fifteen minutes to show his dead-baby slides…. For scientists…the suggestion that Lyme disease was a baby killer was blasphemy. Researchers like Steere and Dattwyler were incredulous. Studying the strange, truncated forms, even Jorge Benach wondered whether, rather than spirochetes, they could be mere artifacts….”

“I couldn’t wait to get a cab back to the airport. I wanted to get started,” MacDonald recalls. In flight, he drew up a hit list of all the major neurological diseases where Lyme could play a role: Alzheimer’s, stroke, Parkinson’s, ALS.”

“If Lyme in the womb was controversial, culturing B. burgdorferi from Alzheimer’s brains appeared fantastical to scientists in the mainstream. If correct, the finding would imply that at least some Alzheimer’s was actually Lyme disease—an extraordinary suggestion that amounted to outright heresy. Unfazed, MacDonald sent his report in to the Journal of the American Medical Association (JAMA) for publication. But it was quashed after a reviewer (MacDonald says he has reason to believe it was Steere) said he had never heard of spirochetes in Alzheimer’s brains and suggested the culture had been contaminated.”

“Up until that point, the criticism from mainstream researchers had been directed primarily at MacDonald. But from that point forward, Burrascano, too, was labeled a quack.”


Wanting to be a part of something novel, exciting and potentially important is all too human. But you have to bring credibility to the table. Bacteria causing ulcers, and infectious proteins once were wild ideas, but the evidence for their existence was compelling. What was offered in Vienna almost 30 years ago was not. It isn’t compelling here and now either.

Finally, while I can’t recommended the distorted perspective of Cure Unknown, it at least suggested one reason for MacDonald’s obsession with knocking Allen Steere in every other sentence. After so many decades it has become a well-gnawed bone. Maybe it’s stuck in his throat.

As suggested in Edlow’s much better book, Allen may have ignored the New London Navy doctors about their use of antibiotics. (But what would Yale professors and Navy sub pen doctors have had in common in the late 1970’s? Nothing. They were aliens to each other.) That’s unfortunate, but understandable. Juvenile arthritis was the working theory in Lyme, CT in those days so a Yale rheumatology fellow was given the task of investigating local cases of apparent JA. If you go to a rheumatologist, you’re likely to get a rheumatologist’s opinion. Go to a gastroenterologist and you’ll get a GI diagnosis. Check with a psychiatrist and you’ll get your head shrunk. This is where Burgdorfer could have been helpful. He had the necessary background and knowledge to know what had happened in Europe and what was likely happening in the NY-NE area. All he had to do was say something—in German, French or English—and someone would have heard him. Tick-related ECM had been treated with penicillin in Europe since 1951. Instead, he remained silent, letting researchers wander down several blind alleys over a number of years, and adding to the overall morbidity and hysteria in the area.

tosho
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Re: One million cases LymeBorreliosis Germany 2012

Post by tosho » Thu 24 Jan 2013 23:31

hv808ct wrote:
by inmacdonald » Wed 23 Jan 2013 18:29
One million cases LymeBorreliosis Germany 2012
viewtopic.php?f=6&t=4471

Dear Tosho,
I will accept your apology.
Thank you for raising the question.
Best,
Alan
by tosho » Thu 24 Jan 2013 1:20
Doctor,
I don't see a reason to apology
Indeed. I won’t apologize to this arrogant troglodyte either.
Hey, hey, hey... I would like to ask you rather not to quote me (from another topic) near your aggressive words. Context of what I said above was another and, unlike in your case, not driven by anger.

Bagge
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Re: One million cases LymeBorreliosis Germany 2012

Post by Bagge » Thu 24 Jan 2013 23:49

.
Thank you for taking the time to post here hv808ct. It's always helpful to hear the full story and hear it explained thoughtfully (with thought), carefully and rationally. Certainly, it seems as if all of your facts check out. Unfortunately, I can't say the same about certain others.
.

Lorima
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Re: One million cases LymeBorreliosis Germany 2012

Post by Lorima » Fri 25 Jan 2013 0:04

hv808ct wrote:  "(But what would Yale professors and Navy sub pen doctors have had in common in the late 1970’s? Nothing. They were aliens to each other.) That’s unfortunate, but understandable." 

Wow - that's so ugly it almost leaves me speechless. (you wish...) ;)

If two sets of doctors in Connecticut can be "aliens" to each other, it's much easier to understand how doctors can fail to care for, and about, their patients. 

To answer the question differently, they had the medical literature, and the world of nature, in common. Open your eyes. 
"I have to understand the world, you see."
Richard Feynman

duncan
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Re: One million cases LymeBorreliosis Germany 2012

Post by duncan » Fri 25 Jan 2013 0:11

Bagge to hv808ct: "Certainly, it seems as if all of your facts check out."

A) Wonderful sentence.
B) What facts? You stipulate "all". I see a lot of opinion; could you please point out "all" those facts?
C) You checked those supposed facts out....how?

Camp Other
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Re: One million cases LymeBorreliosis Germany 2012

Post by Camp Other » Fri 25 Jan 2013 0:27

hv808ct wrote:
by inmacdonald » Wed 23 Jan 2013 18:29
One million cases LymeBorreliosis Germany 2012
viewtopic.php?f=6&t=4471

Dear Tosho,
I will accept your apology.
Thank you for raising the question.
Best,
Alan
by tosho » Thu 24 Jan 2013 1:20
Doctor,
I don't see a reason to apology
hv808ct wrote: Indeed. I won’t apologize to this arrogant troglodyte either.
Are ad hominem attacks really necessary to make your point?
hv808ct wrote: First, it’s hard to know exactly what is meant by “one million cases of Lyme borreliosis” in 2012. Clearly, it cannot mean 1M confirmed cases of borreliosis. There just aren’t that many Germans rolling around in the grass in a given year. It may mean assumed cases. It may mean tests conducted to confirm or exclude LD.
I think if one reviews posts upthread, it was over 700,000 billing cases which were counted and not 1 million. I have already stated that I think that 1 million individual cases of Lyme disease is different from 700,000+ billing cases through insurers. Lorima may differ in opinion from me on how this is counted. Either way - 700,000+ billing cases is nothing to sneeze at and indicates concern about how many people might present with symptoms/issues related to Lyme disease.
hv808ct wrote: In the U.S. there is a huge amount of over-testing (and billing): done in order to reassure patients (and malpractice insurers). Looking at the dollar cost of LD testing and the number of annual tests in the U.S. one would guess the U.S. was in the midst of a massive epidemic of tick-borne infections. (We’re not, of course...
Isn't Lyme disease the fastest growing vector-based disease?

Regarding your points, I think it is a case of six of one, half dozen of another, no? Probably a number of factors play into this phenomenon:

More people are aware of Lyme disease and if they are bitten by a tick, they're more likely to get it checked out - even if they turn out not to have it. This is a good thing, in my opinion - because if they do have it, getting Lyme disease treated earlier leads to better patient outcomes and lowered costs for doctors and insurers. There may be people with "false positives" who get treated - but isn't that better that they do rather than have another chronic Lyme disease patient to clog forums such as this one?

These issues aside, with global warming and climate change, the overall trend in the northern hemisphere is milder winters and extended tick breeding cycles and with it, more infected ticks and opporunties for humans to be in contact with them earlier in the season. And with the expansion of TBD's such as babesiosis into more states, more people will also be concerned with this disease and it could garner attention above and beyond Lyme disease in the future because of its tranmission via blood transfusions.

So, what are you going to do? The odds of people actually getting infected with TBDs of some sort is likely to increase over time (even if there are regional expansions and contractions depending on specific variables) and people do need to practice prevention and seek early treatment. And our culture, our society including medical professionals and 24 hour insurer nurse advice lines encourage us to see the doctor to get checked out because "it's better safe than sorry". I don't think one can deny the reality of this, but I hear that you're concerned about people being worry-warts about it and overtesting.
hv808ct wrote: [cont'd] ...since LD is an antibiotic-responsive, non- communicable, non-fatal bacteria infection limited by geography and seasonality.)
Except in the small percentage of cases where it isn't, like up to 10% of early acute Lyme disease patients with treatment failures who usually do not need retreatment (how this determination is made, I'd like to know), those with Lyme arthritis, and those who do go on to experience complications. And death. Like Karl McManus.

Sure, a lot of people seem to be fine and are even asymptomatic carriers. But some people who are asymptomatic in early Lyme then skip 200 and go straight to Borrelia jail and have instant late stage symptoms foisted on them. Now what? Unfortunately, there is no way to catch these patients earlier because of lack of suspicion. It's tickborne roulette, and their number came up - and they get to deal with the complications of late stage Lyme disease as well as the risks of treating it.
hv808ct wrote: On a lark, I once contributed to this cost and excess testing by having myself tested based on my N.E. residency. Came back negative: no IgM or IgG. So it’s hard to believe there are 1M confirmed cases of LD in Germany. I think such a huge number might have attracted the attention of WHO and ProMED. It hasn’t.
How does this support your position? You are one person out of millions who live in New England. Exptrapolating your one negative result to the whole of New England doesn't logically support your position, and if you have lowered individual risk factors for exposure to ticks because you are working indoors all the time and/or work with ticks, but in a lab where there is sufficient protection from infection, then the likelihood of your being positive goes down anyway. If you work in forestry, I'd have to say I'm impressed at how well you've protected yourself.
hv808ct wrote: Second, I never had occasion to read “Cure Unknown” because generally I am not interested in the views of pundits with axes to grind. Thanks to Google, however, I did stumble across a search engine for the book and typed in MacDonald’s name. (http://books.google.com/books?id=YVqgBT ... =macdonald)
You realize that by posting your opinion and ad hominem attack on Dr. MacDonald that you also could be viewed by others as a pundit with an axe to grind?
hv808ct wrote: Yet, it’s very easy to read it from an entirely different perspective: that of lone amateurs trying to attract the attention of famous researchers and institutions with wild theories and claims, and being rebuffed for lack of compelling evidence.
It was a good read and I read it from different perspectives. I recommend that anyone reading anything try considering the content from different perspectives - you generally get more out of it that way.

That said, it's about more than what you're saying it's about, and a starting point that hopefully will get more people interested in learning about Borrelia itself and its pathogenesis; more interested in the research that people have been doing on it in the field.

Edited: I don't know who (outside of your favorite object of criticism here) you think are other "lone amateurs trying to attract the attention of famous researchers and institutions with wild theories and claims". Were you thinking of anyone else in particular?

What about researchers who are not lone amateurs which work on Borrelia, such as Barthold, Luft, Norris, and others whose work I have been following? I would very much like to know why you consider their theories and claims to be "wild".

[extended citing from "Cure Unknown" snipped...]
“At the conference MacDonald took no more than fifteen minutes to show his dead-baby slides…. For scientists…the suggestion that Lyme disease was a baby killer was blasphemy. Researchers like Steere and Dattwyler were incredulous. Studying the strange, truncated forms, even Jorge Benach wondered whether, rather than spirochetes, they could be mere artifacts….”
Why would MacDonald's focus have been considered blasphemy when it's on record what relapsing fever spirochetes can do in utero, and not long ago the CDC published a report on this very problem? It seems natural to see a connection between the possibility that Borrelia burgdorferi could cause miscarriages and fetal death if other Borrelia could do it. As for the "cysts", spheroplasts, round bodies, etc. - I have no comment on them, not getting enough new confirmation on their purpose other than that which Dr. MacDonald has shared. But the relevance or irrelevance of those morphological forms does not need to have a bearing on the possibility that B. burgdorferi can cause problems in utero.
More from Cure Unknown:
“I couldn’t wait to get a cab back to the airport. I wanted to get started,” MacDonald recalls. In flight, he drew up a hit list of all the major neurological diseases where Lyme could play a role: Alzheimer’s, stroke, Parkinson’s, ALS.”

“If Lyme in the womb was controversial, culturing B. burgdorferi from Alzheimer’s brains appeared fantastical to scientists in the mainstream. If correct, the finding would imply that at least some Alzheimer’s was actually Lyme disease—an extraordinary suggestion that amounted to outright heresy. Unfazed, MacDonald sent his report in to the Journal of the American Medical Association (JAMA) for publication. But it was quashed after a reviewer (MacDonald says he has reason to believe it was Steere) said he had never heard of spirochetes in Alzheimer’s brains and suggested the culture had been contaminated.”
Miklossy has also made the same claims. Do you hold the same opinion of her research?

Aren't there some neurological presentations of Lyme disease on record which are dementia-like in nature?
hv808ct wrote: Wanting to be a part of something novel, exciting and potentially important is all too human. But you have to bring credibility to the table. Bacteria causing ulcers, and infectious proteins once were wild ideas, but the evidence for their existence was compelling. What was offered in Vienna almost 30 years ago was not. It isn’t compelling here and now either.
Why isn't Lyme disease and its pathogenesis compelling? I think Borrelia and spirochetes in general are quite compelling. Radolf and co do too, otherwise they wouldn't have put out this huge tome on it through Horizon Press a couple years ago. They say that Borrelia are unusual, unique, and hold many mysteries for microbiologists to study. There's a lot we don't understand about these bugs, and they're complex.
hv808ct wrote:As suggested in Edlow’s much better book, Allen may have ignored the New London Navy doctors about their use of antibiotics.
It is a really well written book. And yes, according to Edlow, Steere did ignore those Navy doctors regarding their use of antibiotics.
hv808ct wrote: (But what would Yale professors and Navy sub pen doctors have had in common in the late 1970’s? Nothing. They were aliens to each other.)
If I recall correctly, wasn't it a visiting doctor from Denmark who recognized the symptoms as being similar to a tickborne disease in Europe and suggested penicillin? Maybe they didn't have as much in common, but we are talking about DOCTORS here with training and experience and not someone swabbing the deck. You'd think that counted for something, and would have inspired Steere to investigate the bacterial angle more?

One of the complaints from the Lyme patient community and from Polly Murray herself was that Steere seemed to be a little too certain of his own hypotheses about Lyme and discounted the non-arthritic/joint symptoms that they kept telling him about.
hv808ct wrote: That’s unfortunate, but understandable. Juvenile arthritis was the working theory in Lyme, CT in those days so a Yale rheumatology fellow was given the task of investigating local cases of apparent JA. If you go to a rheumatologist, you’re likely to get a rheumatologist’s opinion. Go to a gastroenterologist and you’ll get a GI diagnosis. Check with a psychiatrist and you’ll get your head shrunk.
And in saying this, you just reinforced the point patients and activists have made regarding Steere. They think as a rheumatologist, he was too focused on the rheumatological aspects of the disease. Other researchers in the field who began investigating it looked at the cardiac and neurological effects more. But because Steere was first in the door, the focus was more on the arthritic joints, and for whatever reason that has continued to be a hallmark of the disease for doctors to learn alongside the EM rash.
hv808ct wrote: This is where Burgdorfer could have been helpful. He had the necessary background and knowledge to know what had happened in Europe and what was likely happening in the NY-NE area. All he had to do was say something—in German, French or English—and someone would have heard him. Tick-related ECM had been treated with penicillin in Europe since 1951. Instead, he remained silent, letting researchers wander down several blind alleys over a number of years, and adding to the overall morbidity and hysteria in the area.
MacDonald, then Burgdorfer, then MacDonald, now Burgdorfer. From someone reading what you've written looking from the outside in, it may appear that you have some grudge against both of them dating back decades.

Even if you have a legitimate complaint about their actions and decisions which they made back then, what good does discussion of all this here and now do for improving the lives of patients? What I and other want now is very much current, and that's better prevention, more effective treatments and recognition for tickborne diseases.

Edits: Two minor spelling and punctuation edits.
Last edited by Camp Other on Fri 25 Jan 2013 22:16, edited 2 times in total.

tosho
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Re: One million cases LymeBorreliosis Germany 2012

Post by tosho » Fri 25 Jan 2013 0:30

duncan wrote:Bagge to hv808ct: "Certainly, it seems as if all of your facts check out."

A) Wonderful sentence.
B) What facts? You stipulate "all". I see a lot of opinion; could you please point out "all" those facts?
C) You checked those supposed facts out....how?
Duncan, shhhh, quiet, Bagge thinks that others don't know what was the intention of his post ;)

Bagge
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Re: One million cases LymeBorreliosis Germany 2012

Post by Bagge » Fri 25 Jan 2013 0:51

tosho wrote:
duncan wrote:Bagge to hv808ct: "Certainly, it seems as if all of your facts check out."

A) Wonderful sentence.
B) What facts? You stipulate "all". I see a lot of opinion; could you please point out "all" those facts?
C) You checked those supposed facts out....how?
Duncan, shhhh, quiet, Bagge thinks that others don't know what was the intention of his post ;)
Why all the fuss? Why all the fighting? Why all the cases of "chronic Lyme disease"?

Top leaders in the so-called "LLMD" community have asserted that ALS is really Lyme disease in disguise. They assert that they can cure 90% of any patient's symptoms in less than 10 minutes flat. Go to them. Be cured. It's simple. Really. One visit should take care of it and 10 minutes is well within the coverage for any HMO. Go and be done with it.
.

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