Why is the CDC Trying to Block an Accurate Lyme Disease Test

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
nnecker
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by nnecker » Mon 1 Dec 2014 15:30

But Henry,their side is going to tell you that there are to many(numbers) people out there running around with Lyme and not being treated properly, because of an inaccurate Lyme test.

So here we go with the numbers argument again.

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Mon 1 Dec 2014 18:16

nnecker: Yes, you are right. But, I had to say it one more time to get people to think what is the most appropriate response, and one that is most likely to benefit the patient, without creating a "paradise for quacks" and their unorthodox therapies.

nnecker
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by nnecker » Mon 1 Dec 2014 19:14

Unfortunately,as far as I see it, the paradise for quacks,has already been created. And has been for some time now.

velvetmagnetta
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by velvetmagnetta » Tue 2 Dec 2014 5:01

Henry -

Before you get all huffy about who's got the bigger credential, search Google Scholar for Dr. Eva Sapi's published works. There, you'll find many of her papers - but not on Lyme. She spent years on ovarian cancer research before getting struck down by Lyme disease. And when she was still ill after a standard course of antibiotics, she decided to get to the bottom of it.

And thank God there are people out there who are smart, credentialed, and willing to jump into the fire for us!

You know what? I'll do the Google Scholar search for you:

http://scholar.google.com/scholar?hl=en ... 3&as_sdtp=

Tell me something, Henry. Why, if Sapi's new culture method is no big deal and has been done adequately before, has the CDC felt the need to issue a big fat warning for people to avoid it?

If it's so easy to culture Borrelia, then why is it so inconceivable that Dr. Sapi would be able to do so?

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Tue 2 Dec 2014 14:29

Velvtrmagnetta: You missed my point entirely. I was speaking of credentials that would attests to ones expertise first as a microbiologist and second as a scientist who has done research on Lyme disease. These are the qualifications that matter when it comes to assessing the credibility of someone who develops a new. unconfirmed culture procedure for Borrelia burgdoferi. They have nothing to do with the quality of her work on ovarian cancer or how "smart" she is. The CDC is concerned that the procedure has not been confirmed and validated and that there are issues related to contamination that need to be resolved. Since they are an agency with a mission to protect the public health, they are acting properly in that regard. Only a biased narrow minded person would suggest otherwise.

Incidentally, for those of you who would like to check the credentials/qualifications of members of ILADS and then compare them to others (e.g., the authors of the IDSA guidelines), just go to the search function on PubMed at http://www.ncbi.nlm.nih.gov/pubmed?tool ... l=cdlotool ; then, enter the author"s last name and initials with no punctuation. Also, add Lyme disease to narrow the search . For example, " Smith JT and Lyme disease". Out will pop all their publications on Lyme disease. If you want to focus on research publications, as I have done, exclude opinion papers and abstracts. It's an excellent opportunity to find how just how much research on Lyme disease the "experts" on Lyme disease have really done. Those who lack formal training in the discipline of microbiology are the one who call cell-wall deficient forms of bacteria cyst forms, and who mistake bacterial cell aggregates for biofilms which has a very precise definition and meaning.

nnecker
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by nnecker » Tue 2 Dec 2014 15:25

henry said:
for those of you who would like to check the credentials/qualifications of members of ILADS
Ok Henry I will start.Here's one:

https://explorable.com/scientific-falsification
"Raphael B. Stricker, M.D., University of California at San Francisco.
An investigation conducted by the University found that Dr. Stricker falsified data for a manuscript and a PHS-supported publication reporting research on AIDS.

In the manuscript, Dr. Stricker selectively suppressed data that did not support his hypothesis, and reported consistently positive data whereas only one of four experiments had produced positive results. In the publication, Dr. Stricker reported that an antibody was found in 29 of 30 homosexuals, but not found in non-homosexuals.

However, Dr. Stricker's control data, which he suppressed, showed the antibody in 33 of 65 non-homosexuals. The falsified data was used as the basis for a grant application to the National Institutes of Health. The ORI concurred in the University's finding. Dr. Stricker executed a Voluntary Exclusion and Settlement Agreement in which he has agreed not to apply for Federal grant or contract funds and will not serve on PHS advisory committees, boards or peer review groups for a three year period beginning April 1, 1993."

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LHCTom
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by LHCTom » Tue 2 Dec 2014 19:58

You missed my point entirely. I was speaking of credentials that would attests to ones expertise first as a microbiologist and second as a scientist who has done research on Lyme disease. These are the qualifications that matter when it comes to assessing the credibility of someone who develops a new unconfirmed culture procedure for Borrelia burgdoferi.
Credentials has very little to do with the problem. Over 30 years, I had hundreds of engineers working for me. I saw almost no relationship between "credentials" and their ability to solve a problem or even understand the "problem". This is something you are born with and doesn't come from schools and PhD's. Solving problems is typically an innate ability associated with creativity, imagination and being able to see the forest through the trees and an unwillingness to just mindlessly accept the "stataus quo" while the house is burning. Its not about the quacks who are everywhere, its about the imagination and creativity that prevents the quacks from taking hold.

They should get off their pedastals and recall what science is really about. The really brilliant imaginitive creative problem solvers knew how to think outside the proverbial box. The central core of Lyme researchers that authored:

http://www.healthunit.org/hazards/docum ... isease.pdf

What kind of person would co-author such gross group-think as:
Antiscience and ethical concerns associated with advocacy of Lyme disease

Advocacy for Lyme disease has become an increasingly important part of an antiscience movement that denies both the viral cause of AIDS and the benefits of vaccines and that supports unproven (sometimes dangerous) alternative medical treatments. Some activists portray Lyme disease, a geographically limited tick-borne infection, as a disease that is insidious, ubiquitous, difficult to diagnose, and almost incurable; they also propose that the disease causes mainly non-specific symptoms that can be treated only with long-term antibiotics and other unorthodox and unvalidated treatments. Similar to other antiscience groups, these advocates have created a pseudoscientific and alternative selection of practitioners, research, and publications and have coordinated public protests, accused opponents of both corruption and conspiracy, and spurred legislative efforts to subvert evidence-based medicine and peer-reviewed science. The relations and actions of some activists, medical practitioners, and commercial bodies involved in Lyme disease advocacy pose a threat to public health.
I think they need to look in the mirror and think about where the ethical concerns really lie...

or
Bullying Borrelia: When the Culture of Science is Under Attack

Although Lyme disease responds to short courses of antibiotics, tick-borne Borrelia burgdorferi has been advanced by some as a frequent explanation for medically unexplained symptoms such as continual fatigue, musculoskeletal pains, and subjective neurocognitive dysfunction. Often called “chronic Lyme disease” by adherents of this philosophy, it is loosely defined, and practitioners liberally prescribe nostrums, including prolonged antimicrobial therapies, in a belief that this eradicates suspected infection. Perhaps due to the lack of supportive data, proponents of this theory have developed their own meetings, literature, activist groups, and substantial internet activities to advance their views. Forces motivating this movement are explored, as are tactics used to advance non-scientific ideas that have included legal action and garnering legislative endorsement. While neither logical nor evidence-based, “chronic Lyme disease” harnesses corrosive energies that taint modern medicine and society.
How dare they think they are the science Gods under attack and being bullied. Who is really bullying tens of thousands of ill people and misleading their doctors with so called "selective evidence based medicine" spreading their harm far and wide. All the while trying to minimize and divert research away from honest evidence.

Its the same kind horrible people as in the 80's that called HIV a Gay Disease and ignored it until imaginative researchers showed it was NOT.

They live, think and huddle inside a tiny little box on top of a pedastal they created. Their creativeness and imagination has them rearranging the deck chairs on the Titanic that were knocked over by the iceberg while blaming the iceberg while the ship sinks and everyone dies. They all need to reboot their brains and study what sceince is all about. Science without imagination and forward thinking is just another ideology alongside religion, magic and mythology and is a form of authoritarian rule by power and group think. History will not be kind as reality pushes its way past these bullys.

Are 100% of the people who believe they have Lyme correct? Of course not. But if its 50%, how dare they stand on their pedastals and cry about being bullied while they cut deals with pharmaceutical companies, pump out patents hoping to skim money from the ill, testify as expert witnesses, take their NIH money, and get paid ansurd ammounts to leave people ill. No even these people think PTLS is not real but do they do anything about it, no.

There is little doubt the Lyme world has attrracted quacks that take advantage of very ill people but these "credentialed" doctors and PhD's just don't get it. They are as much or more to blame because they stick their noses up in the air while people suffer and just say "its not Lyme" so who cares while rearranging the deck chairs. In many cases its not Lyme. But that's because they lack the creativity and imagination or desire. The smart imaginative research with clever ideas are not among this bunch. Its shameful but its not much different than Congress where the lowest hanging fruit gets the job and nothing ever changes. They may have used their carreers to block progress and thumb their noses to the ill. Maybe they need to read the original Hippocratic Oath instead of finding clever ways to use the "Do no harm clause" to block imagination and creativity.

If the Sapi culture really works, it helps thousands of people and ends all the viral cohersion. So what do they do? They write a paper that's just dishonest and prevent testing if it possibly works.

http://puurelyrandom.wordpress.com/

Maybe they missed something. It does happen. Anybody think transcriptomes change once in a human host that alters the culture demands? Maybe? Maybe not. Good scientists test carefully and honestly. Did I say "good scientists"?. Hardly. Maybe control freaks. If it doesn't work - so be it. But they don't have the courage, creativity or balls to spend very little effort to take an honest look. That's not science. That's evil and shameful. They are so confident of their Dogma, they don't care if it would help people. It might hurt their carreer if oops, it really worked. I dare someone to take an honest look. I'll bet $1000 nobody in this gang has the guts or scientific integrity. Its sickens me.

I wonder what one of these doctors or PhD's would do if their 7 year old child fell so ill they couldn't get out of bed and after an extensive differntial diagnosis, the only thing they could find is a Western Blot with 4/10 bands and a positive culture and positive C6 but antibiotics didn't help. Would they wonder about that rash a couple years ago?
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

nnecker
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by nnecker » Tue 2 Dec 2014 22:02

I know I have brought this up before,but you just don't seem to get it,so I will post it again.Remember this guy is unbiased and a biology grad student in genomics and computational biology who also has several years work experience.
ChronicLyme's friend said:
And just in general, the argument seems to be "The experiment was contaminated, but not enough to make a difference" which is not really a great position to start from. I'm personally kind of a validation nut - my boss even gets on me sometimes for talking too much about validation in meetings - so take it with a grain of salt. But, before ramping up a clinical test, I'd want to see it test in more than one paper and by more than one lab.
The solution is get bulletproof evidence, NOT TO VILIFY THE REGULATOR.

Henry
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by Henry » Wed 3 Dec 2014 0:02

LHCTom: I don't see anything wrong with the article by Auwaerter et al. It gave an accurate presentation of the facts. The behavior of some of the Lyme disease activists is appalling and could only hamper progress on Lyme disease.

velvetmagnetta
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Re: Why is the CDC Trying to Block an Accurate Lyme Disease

Post by velvetmagnetta » Wed 3 Dec 2014 9:05

No, Henry, I believe you missed my point entirely.

Most people here who have read my posts before know that I do not believe that Lyme disease is a chronic infection. In fact, I believe it is killed off rather rapidly by ordinary antibiotics such as doxycycline and minocycline, and what we are left with is a chronic condition. No one is angrier than I to see government scientific agencies bow to the pressures of the Lyme Community to offer intravenous antibiotics to people who are still ill after a standard course of oral antibiotics without any sort of scientific proof that this practice helps anyone.

This is a very bad idea, not scientifically validated, and may actually be dangerous not only because of the dangers of IV sepsis and other problems associated with extended antibiotic treatment, but because I think, for some of us, antibiotics used without some kind of support for the incredible pain they can can cause (thought of in the past as the Herxheimer Reaction) is not the Herx Reaction at all but something else much more dangerous and possibly even fatal.

I believe that whatever this is that happens to some of us, with varying degrees of severity, is why we are still ill after antibiotic treatment - not that we are still infected with a few elusive spirochetes. Lyme spirochetes are not that small, so I don't think they can hide all that well from researchers.

But most people don't have such an advanced case as I. Because of the extreme amount of pain I'm in now and have been in for years, I have been able to see that all those great and interesting theories about Lyme disease are just not true. There are no toxins from Lyme to get rid of, so detoxing is completely pointless. No amount of antibiotics is going to kill what's already dead. What most people see as an improvement is really a placebo effect - a very real effect - but it has nothing to do with what they're taking and it doesn't last. But it works for them because they aren't as sick as I am (and some of us on here are) so the lack of efficacy is not as jarring for them as it is for some of us.

This is why it is so important for me, even more important than it is for you, Henry, to prove, beyond a shadow of a doubt, that Lyme disease does not persist (at least not in its whole, active, spirochetal form) after antibiotics.

Henry, I need this to happen so we can move on to figuring out what is really wrong with us!

Once people TRUST that their infections are DEAD and GONE, we can explore other possibilities. But they must trust the outcome of the test. They must trust the people administering the test. It doesn't matter what you or I think of Dr. Sapi and her credentials, it matters what the "Loony" Lyme Community thinks. Don't you see that?

So stop dickin' around and encourage anyone you know at the CDC to validate this culture!

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