A critical appraisal of the ILADS and the so-called LLMDs

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Martian
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A critical appraisal of the ILADS and the so-called LLMDs

Post by Martian » Fri 16 Nov 2007 22:51

Quoting Source: http://www.lymeneteurope.org/forum/view ... f=10&t=263
LymeEnigma wrote:Right now I am at a crossroads, disillusioned by what I've seen on both sides. I feel like the IDSA's ridiculous guidelines are responsible for the chronically ill state that I live in today, but also that most ILADS doctors are more than happy to help me part with my every last penny over the atrocity.
I certainly believe that this applies to a least SOME doctors, but I don't know if it applies to MOST. Before talking more about them, I would like to have a definition of both an LLMD and an ILADS doctor; because it seems that more and more people call everyone an LLMD who diagnoses Lyme or treats long-term.
CaliforniaLyme wrote:Anyway, I have found ILADS docs to be completely accurate and am sorry you are so skeptical about them, sincerely, not being adversarial here. I think it would be easier not to be skeptical if you had MY LLMD who is 10 bucks a visit.
Do you find ALL of them to be completely accurate? I personal think at least one of them should be avoided by Lyme patients: Dr. Bach. I have heard too many very negative stories about his dubious practices. I don't understand how he can be a board member of the ILADS. Perhaps it says something about the ILADS.

The ILADS guidelines are disappointing too. These so-called evidence-based guidelines showed nothing new, are referring to some of their own publications, and simply lack evidence. Furthermore, they were published in some obscure journal with little impact. And last but not least: at first one had to pay for it!

And then there are the guidelines from Burrascano, which doesn't have any references. Even when he writes that "studies have shown.." he doesn't tell us WHICH freaking studies! The so-called international ILADS is not like it should have been. It exists for almost a decade now and what have they accomplished?

CaliforniaLyme
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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by CaliforniaLyme » Sat 17 Nov 2007 2:31

Oh Gosh Martian, not in person accurate!!! but on ILADS as far as standard of care and written guidelines, sure. I don't know what happens in doc offices across the country!!!

ILADS has just been trying to stay afloat. That is hard enough for treating clinicians under attack-!*)!

I met Doc Burrascano. He is one of the best people I have ever met in my life- the goodness that is in him just SHINES!!! So is Doc Stricker- and Doc Yang- heck, she's a Saint, a bit religiously nutty, but a saint.

Doc Bach??? Rumors on the INternet- and people have had bad experiences like... the only ones that have been reported to me in person are one 7 hour wait in his waiting room- but to his credit he was still in the office until past 2 am according to the person who waited- med emergency of another patient came first-

Re ALS rumors & Doc Bach- families of ALSers get angry when they die. MOST Lyme docs won't go NEAR
ALSers because heck- truthfully, come on, MOST of them DIE. They do. they DIE. Only a few live. I think more have lived locally near me because 2 of the 3 were Lyme FIRST which potentially narrows them down to Lyme or TBE as far as cause- (we have had 4, 3 have lived)(Liegner says 1 of 7 live in general with tx, Doc B has said even less, others docs say less...) So taking on ALSers is no easy matter- it is depressing- and mostly doomed- and if you find the person is non-responsive and advocate stopping therapy, people don't necessarily want to hear it. So I think there is a lot of ambiguity in the accusations onlin eagainst Doc bach i that regard.

I hvae never met the man. I have no knowledge of him firsthand at all.

I come from a family of lawyers.

HEARSAY, my friend. Hearsay!!!

I think the LLMDs have been fighting like hell for us- and many of htem charge so much because they have ASTRONOMICAL legal funds/fees (and Doc B had what, 3 kids in college at the same time?). Otehrs don't charge much at all.

The guy I see now is $10. Other local ones- they all take insurance- that is because in CA we passed legislation (I helped draft initial draft during secret meeting!!!*)!!! to protect our doctors!!! ANYWAY,
I am lucky. My LLMD right now- he hates Igenex, won't use it btw. He does not consider himself a Lyme doc.
He is a rogue lone wolf type. Bless him. He's adorable.

But Doc Stricker saved my life by risking his license.

You know what Martian? 95-98% (this is me guessing not a real number) of the pepole on LymeNet or here can GO OFF herbs or abx or whatever- and they will suffer- but they will not disintegrate neurologically and die with seizures and dementia. Then there are those like me. I would have. I was.

No offense, and I may shock some people here and anger you, but I can UNDERSTAND why the IDSA believes in sacrificing the small numbers of neurologically tragic people like ME to protect the MAJORITY of America from antibiotic resistant strains. I can UNDERSTAND where they are coming from!!! Because I have been on abx for almost 10 years now. And I may be a small % but we KNOW how many of US there really are- and if that got out there would be hundreds of thousands of people on abx longterm...

But I don't WANT to die like that. I want to live.

I want Glenn Edward Killion to come back to life.

We are expendable in the big picture. That's what i see in the IDSA version of reality.

But I want a reality where Shirley Forsman and CT Girl, 7 years old, lived, where CT Girl, 7 years old got to be like Evan White and go to COLLEGE, and LIVE. Where Shirley and Glenn Killion & CT Girl, now 23 years old, maybe 30, all have TEA. That's what I want.

That's ILADS. That is Liegner. Liegner is a fine man, one of our best. That is STricker. And Bach? Heck, I don't know. I don't know what he does, except I have a video where he helps Lymies walk again, has footage of them ebfore and after- and he helps people. I know that there are plenty of people on the internet who try to destroy people.

Heck, if you believe what hecklers say on the internet they wrote all sorts of horrible porno stuff about my husband and me and my kids!!! People will write lots of evil stuff. It is sick. And I know one person who HATED Bach who had a lot of time on his hands and a lot of creativity- so who knows?!?!?! Do oyu have any first hand experience with Bach? I know he is WAY expensive- that is a strike in my book, but many people can afford it so it's not in theirs!!!

Best wishes,
Sarah

Nick
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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by Nick » Sat 17 Nov 2007 12:44

Martian wrote: The ILADS guidelines are disappointing too. These so-called evidence-based guidelines showed nothing new, are referring to some of their own publications, and simply lack evidence. Furthermore, they were published in some obscure journal with little impact. And last but not least: at first one had to pay for it!

And then there are the guidelines from Burrascano, which doesn't have any references. Even when he writes that "studies have shown.." he doesn't tell us WHICH freaking studies! The so-called international ILADS is not like it should have been. It exists for almost a decade now and what have they accomplished?
from a strictly scientific point yes, the ILADS guidelines are disappointing. Even for ABX treatment in early lyme there is no rocksolid proof that it works (longterm); all the published studies about this are severely flawed (but well, even IDSA doesn't fight this point of view, so we will assume it works). For chronic lyme, the proof that longterm ABX works is severely lacking. There are individual success stories, but strictly taken (from a scientific point of view) they don't prove anything; people sometimes get better on the most bizarre protocols. I think the patient records from Burrascano, Jemsek etc. are pretty convincing though even if they don't equate to a double-blind test of their protocols.

But now the other side of the story. When you check recent presentations from Burrascano, or articles from Stricker, there are MANY references; not just obscure publications or articles from their friends. They cannot prove that the ILADS guidelines will restore the patients health because frankly, for some that will never happen (they clearly admit that). But they present solid proof about how persistent and complicated the Lyme problem is, and that the IDSA views are horribly flawed. Guys like Wormser and all his friends should NEVER be allowed to publish articles in scientific magazines, and certainly not in 'higly regarded' magazines like NEJM (well, thanks to that episode we now know what the value of those NEJM publications really is).

Many ILADS docs are under severe pressure but they keep trying to help their patients; that is a lot better than the IDSA docs who just discard patients as garbage after they have had their two weeks of ABX (if they are lucky, many don't get any treatment at all as it is 'all in their heads' - despite clear test results etc.). Usually ILADS docs get the patients with the most severe problems - those who failed all other/official treatments; that is a severe disadvantage to start with for them. They make mistakes, but I admire these docs for the courage while being under intense fire from the Dark Side. I would like ILADS to focus less on longterm antibiotics because I think that is for society as a whole not an attractive solution (but as long as ABX are liberally used in farming it is a non-issue IMHO). But without ILADS, we would probably remain in the Dark Ages forever when it comes to Lyme.

"A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it" / Max Planck

CaliforniaLyme
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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by CaliforniaLyme » Sat 17 Nov 2007 17:16

yes-

But without ILADS, we would probably remain in the Dark Ages forever when it comes to Lyme.
But without ILADS, we would probably remain in the Dark Ages forever when it comes to Lyme.
But without ILADS, we would probably remain in the Dark Ages forever when it comes to Lyme.


YES!!!

Personally, I think Jonathan Edlow is great. We need about 1,000 more of him. Doctors in the middle...

lou
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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by lou » Sun 18 Nov 2007 16:37

I read Edlow's book and can't agree that he is great. He hedges his bets in a way that it is obvious he is kowtowing to the IDSA/NIH crowd, but throws in enough contrary opinions to ensure that if/when the truth ever comes out, he won't look like a total doofus. But he also won't get slapped down by the powerful forces.

If you read enough medical history, it becomes clear that the establishment is frequently holding back progress for whatever reasons. They seem to be totally invested in the status quo, even if it is producing terrible results.

Don't see how we can fault ILADS members for not having published in big name journals. They have tried mightily and been rejected. This is why they are in less known journals. And when most of the NIH and CDC money in the U.S. goes to the IDSA crowd and others who will prostitute themselves for a research grant, how can we get honest research done? We know they are prostitutes because what they say now is frequently not what they were saying before Steere et al wrote the overdiagnosed, overtreated article. This was the signal from the establishment that they did not want a lyme epidemic. Universities in the U.S., at least, get a lot of government money and will do anything for it. Look at Yale, which gets hundreds of millions in NIH grants.
Last edited by lou on Sun 18 Nov 2007 17:39, edited 1 time in total.

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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by lou » Sun 18 Nov 2007 17:38

The IDSA claims they are worried about antibiotic resistance, which is a joke considering what is going on in agriculture. Basically they are sacrificing sick people for NO GOOD REASON. They have blood on their hands. The truth in any particular disagreement does not always occur in the middle.

--------------------------------------------------------------------------------------------------------------------

Web address: http://www.sciencedaily.com/releases/20 ... 153926.htm

Source: University of Illinois at Urbana-Champaign
Date: August 22, 2007

Keywords:
Water, Agriculture and Food, Recycling and Waste, Bacteria, Developmental Biology, Evolutionary Biology
Team Tracks Antibiotic Resistance From Swine Farms To Groundwater

Science Daily — The routine use of antibiotics in swine production can have unintended consequences, with antibiotic resistance genes sometimes leaking from waste lagoons into groundwater.

A research team tracked the movement of tetracycline resistance genes from wastewater lagoons to groundwater at two Illinois hog farms. Red circles mark the locations of groundwater testing wells on Site A, the more impacted facility. The lagoon is unlined.

In a new study, researchers at the University of Illinois report that some genes found in hog waste lagoons are transferred – “like batons” – from one bacterial species to another. The researchers found that this migration across species and into new environments sometimes dilutes – and sometimes amplifies – genes conferring antibiotic resistance.

The new report, in the August issue of Applied and Environmental Microbiology, tracks the passage of tetracycline resistance genes from hog waste lagoons into groundwater wells at two Illinois swine facilities.

This is the first study to take a broad sample of tetracycline resistance genes in a landscape dominated by hog farming, said principal investigator R.I. Mackie. And it is one of the first to survey the genes directly rather than focusing on the organisms that host them. Mackie is a professor in the department of animal sciences and an affiliate of the Institute for Genomic Biology.

“At this stage, we’re not really concerned about who’s got these genes,” Mackie said. “If the genes are there, potentially they can get into the right organism at the right time and confer resistance to an antibiotic that’s being used to treat disease.”

Tetracycline is widely used in swine production. It is injected into the animals to treat or prevent disease, and is often used as an additive in hog feed to boost the animals’ growth. Its near-continuous use in some hog farms promotes the evolution of tetracycline-resistant strains in the animals’ digestive tracts and manure.

The migration of antibiotic resistance from animal feeding operations into groundwater has broad implications for human and ecological health. There are roughly 238,000 animal feeding operations in the U.S., which collectively generate about 500 million tons of manure per year. Groundwater comprises about 40 percent of the public water supply, and more than 97 percent of the drinking water used in rural areas.

Federal law mandates that animal facilities develop nutrient management plans to protect surface water and groundwater from fecal contamination. Most swine facilities hold the effluent in large, water-filled lagoons until it can be injected into the ground as fertilizer. Thanks to a change in the law in the late 1990s, new lagoons must be built with liners to prevent seepage. Swine facilities in operation prior to the new regulations are allowed to continue using unlined lagoons, however.

Some of these lagoons leak.

The researchers extracted bacterial DNA from lagoons and groundwater wells at two study sites over a period of three years. They screened these samples for seven different tetracycline resistance genes.

They found fluctuating levels of every one of the seven genes for which they screened in the lagoons. They also found that these genes were migrating from the lagoons to some of the groundwater wells.

It should be noted that many genes that confer antibiotic resistance occur naturally in the environment. Tetracycline is itself a bacterial product, employed by Streptomyces bacteria long before humans discovered its usefulness.

In order to determine the origin of the tetracycline resistance genes found in the groundwater, the researchers conducted a genetic analysis of one gene family, tet(W), in samples from the lagoons and from groundwater wells below (downgradient of) and above (upgradient to) the lagoons. They found that the variants of tet(W) genes in the upgradient, environmental control wells were distinct from those of the lagoons, while the wells downgradient of the lagoons contained genes consistent with both the background levels and those in the lagoons.

“There’s a human impact on these sites that is superimposed on a natural signal,” said postdoctoral research assistant Anthony Yannarell, an author on the study.

One of the two hog farms, “Site A,” was more impacted by resistance genes from the lagoon, due to its hydrogeology. The site included two layers of sand – at about two meters and eight meters below the surface – through which groundwater flowed.

“Every time we looked in the lagoon, we saw all of the genes we were looking for,” Yannarell said. “At Site A, all the wells that were closest to the lagoon almost always had every gene. As you got further from the lagoon you started to see genes dropping out.”

The resistance genes were present at much higher levels – “an order of magnitude higher,” said the authors – in the lagoon than in the contaminated wells. Most were diluted as they moved away from the lagoons in the groundwater.

There was one notable exception. A gene known as tet(C) was found at higher levels in some of the groundwater wells at Site A than in the lagoon. Its heightened presence was not consistent with background levels, indicating that something in the environment was amplifying this one gene, which had originated in the lagoon.

Perhaps the gene had migrated to a new organism, Yannarell said, to find a host that was more suited to conditions in the groundwater.

“What we are seeing is that the genes can travel a lot further than the bacteria,” Mackie said. “It’s a matter of getting the DNA into the right organism. It’s a relay race.”

Other authors on the study are postdoctoral research assistant S. Koike; Illinois State Geological Survey geochemist I.G. Krapac; research assistant H.D. Oliver; USDA Agricultural Research Service scientist and professor of crop sciences J.C. Chee-Sanford; and visiting professor of animal sciences R.I. Aminov.

Note: This story has been adapted from a news release issued by University of Illinois at Urbana-Champaign.


Copyright © 1995-2007 ScienceDaily LLC — All rights reserved

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LymeEnigma
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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by LymeEnigma » Sun 18 Nov 2007 19:15

Martian wrote:Quoting Source: http://www.lymeneteurope.org/forum/view ... f=10&t=263
LymeEnigma wrote:Right now I am at a crossroads, disillusioned by what I've seen on both sides. I feel like the IDSA's ridiculous guidelines are responsible for the chronically ill state that I live in today, but also that most ILADS doctors are more than happy to help me part with my every last penny over the atrocity.
I certainly believe that this applies to a least SOME doctors, but I don't know if it applies to MOST. Before talking more about them, I would like to have a definition of both an LLMD and an ILADS doctor; because it seems that more and more people call everyone an LLMD who diagnoses Lyme or treats long-term.
I agree that no one should take an all-or-nothing view against either side in this issue, and I also agree that, for the most part, there is a difference between any "LLMD" and ILADS members ... however, I do not necessarily believe that all ILADS members are equally competent in diagnosing and treating Lyme and other tick-borne illnesses.
Martian wrote:The ILADS guidelines are disappointing too. These so-called evidence-based guidelines showed nothing new, are referring to some of their own publications, and simply lack evidence. Furthermore, they were published in some obscure journal with little impact. And last but not least: at first one had to pay for it!

And then there are the guidelines from Burrascano, which doesn't have any references. Even when he writes that "studies have shown.." he doesn't tell us WHICH freaking studies! The so-called international ILADS is not like it should have been. It exists for almost a decade now and what have they accomplished?
The lack of proper citing is my biggest problem with these works; another problem in similar works is circular referencing ... drives me nuts. These guidelines could offer a great deal of valuable information, but until every "fact" is given a reliable source, the work as a whole is utterly useless.

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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by LymeEnigma » Sun 18 Nov 2007 19:25

Lou wrote: Don't see how we can fault ILADS members for not having published in big name journals. They have tried mightily and been rejected. This is why they are in less known journals.
Actually some members have published in big name journals; many years ago Stricker, for example, had his chance and blew it by fudging statistics on AIDS in an article he and a couple of other doctors submitted to the New England Journal of Medicine. With great embarrassment, the NEJM retracted the article, and the NIH penalized Stricker by temporarily barring him from further grants. Stricker was run out of hematology with his tail between his legs, went into penis enlargement and weight management for a while, and then opened up shop as a LLMD.

This is not to bash Stricker; perhaps he is a wonderful LLMD. However, some of these people have a difficult time getting their articles published for a reason....

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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by cave76 » Wed 21 Nov 2007 22:56

Not surprisingly, I'm glad that there ARE llmds who are treating us.

I'm sure I'm not the only Lymie who would probably be much worse off or dead without an llmd who rx's long term abx.

But I don't think that they ALL are angels or sweethearts. :)

I just recently saw my llmd and was able to talk about the differences between llmd treatments that seems to exist now. (I don't think it did in the '90s and early '00s)

I'd always wondered about the treatment protocols that some people reported from their llmd---- ones that included some very non-scientific treatments. :(

The word that came up in that discussion was "top-tier' llmds.

I had an 'A HA' moment and it became clear----- ILADS is in sore need of money. Almost anyone can become an ILADS member. Some of the new members will go through a mentoring week with another established ILADS doc.

But that doesn't mean that the new member won't go back to his/her practice and revert back to previous training and/or beliefs; as in----herbs and supplements ---- if he had been trained as an ND or works under the aegis of an MD who is alternative minded and calls the shots in that practice. :(

And that has happened, I know for a fact.

That's where we get 'llmds' such as Kinderlehrer or Klinghardt (if anyone has actually 'proven' that Klinghardt IS an ILADS member.)

The ILADS Guidelines? I can't say that they're 'good' or 'bad'. Somewhere in between.

It's entirely possible that those Guidelines were produced simply to have something to point to. I've always felt the same way about Burrascano's Guidelines.

They're "guidelines". That's all. Better than nothing. And without those guidelines, that's what we'd have: Nothing.

There can be nothing 'perfect' about the docs or the treatments as long as what we're fighting is an exceedingly clever and manipulative and creative Survivor type of bacteria.

I became much more tolerant of our llmds since, as far as I can tell after 12 years in the trenches, no one can't point to any ONE treatment that is better for the most people. NEVER! What does that tell us?

To touch lightly on the 'sins' of Stricker------I can't say much for sure except that I imagine that the same flaw can probably be found in almost any M.D. who walks this earth.

Assuming that he DID do what his detractors say he did---- I don't know who those detractors are or their motives behind sussing out his infraction: I've been around the block too many times to not be aware that there is always another side.

And if he DID do it---then---- I'm seeing him for his ability to think clearly and to stick to science (our best bet so far), not to fall in love with him. :)

I'd see the Devil Himself if he could do everything Dr. Stricker has done for me and for others.

My creed: What can you do for ME? :)

Stricker's been right up there at the front line for me.

And I sincerely hope he's getting rich! But I don't think he is.

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Re: A critical appraisal of the ILADS and the so-called LLMDs

Post by sizzled » Thu 22 Nov 2007 0:23

What I'd like to know is that is there going to be another journal like the Journal for Spirochetal .....(I forget the rest).

Sure would be great if some or all the LLMDs could write again and report their findings since it has been over 20 years of tx with long-term abx. I mean, what about statistics??

I think one doc is doing that but they are all different.

Their years of treating should be recorded and count!!!!

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