Lyme Disease: Evidence-based Approach & Great Controversy

General or non-medical topics with information and discussion related to Lyme disease and other tick-borne diseases.
Bagge
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Lyme Disease: Evidence-based Approach & Great Controversy

Post by Bagge » Fri 4 Nov 2011 1:38

.
http://relative-risk.blogspot.com/2011/ ... -book.html
An evidence-based book

Lyme Disease: An Evidence-Based Approach
John Jay Halperin (Editor)

From Chapter 17:

We live in interesting times. As a result of vigorous efforts by well-intentioned but misinformed patient advocates and by a small cadre of their physician supporters, Lyme disease – with fewer annual confirmed cases in the USA than varicella (Hall-Baker et al., 2010) – is repeatedly characterized as epidemic, controversial and difficult to diagnose or treat. Pseudo-documentary movies (Halperin, 2009) have been produced vilifying experts in the field and purporting to demonstrate a medical conspiracy – driven supposedly by unsupported and unsupportable allegations of conflicts of interest – to hide the suffering of the victims of this disorder.

The press, politicians and advocates repeatedly portray this as a subject of substantive and legitimate scientific controversy. Yet the scientific evidence is remarkably consistent, providing no real basis for controversy (Sigel, 2007; Weissmann, 2007; Baker, 2010). That fact notwithstanding, the states of Connecticut, Maryland, Minnesota, Massachusetts, New York, Pennsylvania, Rhode Island and others have passed or considered legislation or regulations to assure the provision of demonstrably ineffective prolonged antibiotic treatment (Klempner et al., 2001; Krupp et al., 2003; Fallon et al., 2008) for patients diagnosed with an undefined disorder termed ‘chronic Lyme disease’. In 2006, the Attorney General of the state of Connecticut opened an investigation of the Infectious Diseases Society of America (IDSA) for issuing evidence-based guidelines for the diagnosis and treatment of Lyme disease, on the legally questionable theory that this clinical guideline represented an anti-trust violation. Although this remarkable action yielded no finding of any anti-trust violation (but ultimately cost the IDSA over half a million dollars in legal and other costs (IDSA, October 2010, personal communication), it did result in a detailed review of the guidelines by an independent panel that endorsed all of the guidelines’ original recommendations (Lantos et al., 2010).

What, then, is the basis for this controversy?

Read the entire chapter here. http://www.aldf.com/thegreatcontroversy.shtml


Table of Contents
Part I: Biological Substrate

1. Ticks: the Vectors of Lyme Disease
2. Borrelia: Biology of the Organism
3. Borrelia: Interactions with the Host Immune System
4. Laboratory Diagnostic Testing for Borrelia burgdorferi Infection
5. Persistence…Infection after Antibiotic Treatment: What Can We Learn from Animal Models?
6. Global Epidemiology of Borrelia burgdorferi Infections

Part II: Clinical aspects

7. Antibiotic Therapy for Infection Caused by Borrelia burgdorferi Sensu Lato
8. Lyme Borreliosis in the UK and Ireland
9. Lyme Borreliosis: the European Perspective
10. Erythema Migrans
11. Cardiac Involvement
12. Rheumatological Involvement
13. Nervous System Involvement
14. Lyme Disease in Children
15. The Psychology of 'Post-Lyme Disease Syndrome' and 'Not Lyme'
16. Chronic Lyme Disease
17. Lyme Disease: the Great Controversy

Bagge
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Joined: Wed 19 Oct 2011 19:49

Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Bagge » Fri 4 Nov 2011 1:45

.
http://www.aldf.com/thegreatcontroversy.shtml
"Lyme Disease: the Great Controversy"

Halperin, J.J., Baker, P., and Wormser, G.P. In, "Lyme Disease: An Evidence-based Approach" (J.J. Halperin, Ed.) ,CAB International, 2011.


If a fraction of the time, money and energy that has been spent on inappropriate care and
advocacy had instead been invested in scientific studies to understand better the pathophysiology
of the disorder they refer to as ‘chronic Lyme disease’, we would probably all be in a much
better position to help the unfortunate individuals whose lives have been severely
disrupted by this symptom complex.
.

tosho
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by tosho » Wed 9 Nov 2011 20:15

Hypocrite? :roll:


Also check this one (page 19)
http://www.wfneurology.org/pdfs/worldNe ... 09_row.pdf

Maybe "Under our skin" is not perfect, but traditionally, there is not a single word in IDSA critique about people who benefited from long-term antibiotics. This is what they call objectivity?

Camp Other
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Camp Other » Wed 9 Nov 2011 22:22

The thing is, we do need more effort and time spent on research that will help patients.

Whether you call hypocrite or not, nothing changes unless there is more research - preferably by independent researchers who are not stuck in the middle of this controversy.

No, Under Our Skin is not perfect. It's good at characterizing the kind of problems patients have faced in their day to day lives and how serious Lyme disease can be. But it is not strong enough on the science, including in terms of analysis and presentation of case studies of those who improved on long term treatment.

tosho
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by tosho » Wed 9 Nov 2011 23:11

Camp Other wrote:The thing is, we do need more effort and time spent on research that will help patients.
I agree. But the IDSA behaves as if Lyme Disese & Coinf. were perfectly studied and there is no need for any other research. This approach has a catastrophic consequences to people not only in the USA, but also in most of the European countries, including Poland.

And their statement:
"If a fraction of the time, money and energy that has been spent on inappropriate care and
advocacy had instead been invested in scientific studies to understand better the pathophysiology
of the disorder they refer to as ‘chronic Lyme disease’, we would probably all be in a much
better position to help the unfortunate individuals whose lives have been severely
disrupted by this symptom complex."

is a pure hypocrisy. Now the try to fool people that pathophysiology of 'chronic Lyme disease' (as they call it, I call it chronic Lyme disease) is not studied enough because time, money and energy has been spent on advocacy and helping very sick people. What a nonsense...

Bagge
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Bagge » Thu 10 Nov 2011 0:04

Highlights not in original text.
tosho wrote:But the IDSA behaves as if Lyme Disese[sic] & Coinf. were perfectly studied and there is no need for any other research. This approach has a catastrophic consequences to people not only in the USA, but also in most of the European countries, including Poland.

And their statement:
"If a fraction of the time, money and energy that has been spent on inappropriate care and
advocacy had instead been invested in scientific studies to understand better the pathophysiology
of the disorder they refer to as ‘chronic Lyme disease’, we would probably all be in a much
better position to help the unfortunate individuals whose lives have been severely
disrupted by this symptom complex."

is a pure hypocrisy. Now the try to fool people that pathophysiology of 'chronic Lyme disease' (as they call it, I call it chronic Lyme disease) is not studied enough because time, money and energy has been spent on advocacy and helping very sick people. What a nonsense...
It is likely a mistake to confuse the opinions of the authors of this book with those of the IDSA. They are not stating that their opinion represents the IDSA as a whole, unless I am missing something.
If a fraction of the time, money and energy that has been spent on inappropriate care and
advocacy...
This forum is jam-packed full of examples of "inappropriate care". I seriously doubt they are opposed to "very sick people" receiving help, but rather as they state, they are opposed to "inappropriate care and advocacy". Key word "inappropriate".
.

tosho
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Location: Poland

Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by tosho » Thu 10 Nov 2011 1:03

Of course it should be Lyme Disease instead of Lyme Disese, that was a typo.

As long as Wormser, Halperin and others have a decisive impact on the guidelines it's not much difference for me whether they speak as a book authors or as a members of an expert panel of the IDSA. It's all the time the same approach.
But precisely speaking, you are right - their opinion does not mean it is the IDSA (as a whole) opinion.
Bagge wrote: This forum is jam-packed full of examples of "inappropriate care". I seriously doubt they are opposed to "very sick people" receiving help, but rather as they state, they are opposed to "inappropriate care and advocacy". Key word "inappropriate".
I think the authors meant mainly long-term antibiotics when saying "inappropriate care", not the hocus-pocus alternative treatments like energetic medicine etc.

And who they are accusing of lack of investments in better understanding pathophysiology of the disorder? People that continously suffer and a small group of doctors that try to help them?

Bagge
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Bagge » Thu 10 Nov 2011 1:35

tosho wrote:And who they are accusing of lack of investments in better understanding pathophysiology of the disorder? People that continously [sic] suffer and a small group of doctors that try to help them?
This is an old argument. Maybe someone else is willing to go at it with you. I'm not.
.

tosho
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Location: Poland

Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by tosho » Thu 10 Nov 2011 2:05

There is no need to point out every of my typos. English is not my priamry language, so take this into consideration, please.
Bagge wrote:
tosho wrote:And who they are accusing of lack of investments in better understanding pathophysiology of the disorder? People that continously [sic] suffer and a small group of doctors that try to help them?
This is an old argument. Maybe someone else is willing to go at it with you. I'm not.
.
It is an argument that is still valid.

Wormser and others are people with unethical attitude. Instead of lying that current guidelines provide very effective standards of care they should long time ago officialy inform that much more research is needed. What is this whole "circus" for?

Henry
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Re: Lyme Disease: Evidence-based Approach & Great Controver

Post by Henry » Thu 10 Nov 2011 19:17

The film "Under Our Skin" provides a vivid condemnation of all that is wrong with LLMDs and the treatment regimens that they propose. Early in the film, there is a scene where the Forest Ranger is examining dozens -- if not hundreds-- of what look like vials of prescribed medications. In all honesty, one has to ask what kind of physician is treating this patient? What is the rationale for the treatment regimen(s) being used? If the patient's condition improves, how is one to determine which of the many medications being used is beneficial? How does one determine, under such circumstances, if any beneficial effect observed is due to a placebo effect? This does not inspire confidence in the clinical expertise of the LLMD, even though the patient is convinced that all of this is necessary and must be done. This is neither good clinical science nor good medical practice. Rather, the LLMD is just "tinkering", i.e., trying a little bit of this or a little bit of that, hoping that something will work. Nothing being done to treat this patient is evidence-based and proven to be beneficial. The patient is treated no better than a "guinea pig" and at great expense. How can anyone defend such malpractice? Unfortunately, this is typical of what is being done by many LLMDs. Because all of these unorthodox approaches have been found to be complete and utter failures, patients are led to believe that chronic Lyme disease is incurable.

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