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.
Lorima
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Joined: Mon 29 Oct 2007 20:47

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

Post by Lorima » Sat 29 Nov 2014 17:50

Henry,
You're on really thin ice, as a supporter of the ALDF, bringing up the issue of scientific competence.
It looks as if you are failing to distinguish between kinds of competence: scientific, political, or PR and advertising.
Young people often have a tin ear for this; and I guess it's not guaranteed, that these distinctions become clearer as one gets older. Maybe we have to work at it.
"I have to understand the world, you see."
Richard Feynman

Henry
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Joined: Thu 10 Nov 2011 18:49

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

Post by Henry » Sat 29 Nov 2014 18:30

No, I just don't think it is very smart to pay $500 -$1,000 for an unvalidated test -- of any kind. I take it you see nothing wrong with that.

Henry
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Joined: Thu 10 Nov 2011 18:49

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

Post by Henry » Sat 29 Nov 2014 18:31

Lorima: Yes, you do need to work on that.....

duncan
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Joined: Wed 5 Sep 2012 18:48

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

Post by duncan » Sat 29 Nov 2014 18:43

I recommend walking a mile in our shoes, Henry, before issuing such damning pronouncements. I also recommend steering clear of sweeping absolutes.

What I would do is irrelevant. I respect the decision of those who bought it, and I understand it. We all know how woefully inadequate current diagnostics are. When a new product from a respected source appears, it should be no surprise to anyone that patients - many sick and unvalidated and jettisoned from medical mainstream for years - are eager to try it.

To call any one of them a fool is way off the mark, and misunderstanding their predicament.

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

Post by Henry » Sat 29 Nov 2014 19:51

Duncan: Yes, they have every right to be fleeced and squander their hard earned money if that is what they wish to do. However, for some to lobby politicians to require health insurance companies to pay for unvalidated tests unjustly adds to the cost of health insurance; that not only puts the price out of reach for some who can barely afford what they can get, but also adds to the cost you and I must pay for health insurance.

nnecker
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Joined: Wed 19 Dec 2012 22:57

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

Post by nnecker » Sat 29 Nov 2014 20:04

Henry to cut to the chase on my part, LCHTom believes that Bb goes under some sort of transcriptome change during different phases of infection, and that standard BSK cannot culture these kind of spirochetes,but the Sapi culture can.Do you buy into this theory?

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

Post by velvetmagnetta » Sun 30 Nov 2014 0:13

I don't know about this transcriptome thing, but there are several things that Dr. Sapi did differently that she believes may have directly or indirectly contributed to the increase in bacterial count and growth speed that she observed in her experiment:

1. Modified BSK-H medium. She added an antibiotic (rifampicin) to the traditional BSK recipe. She also altered the ratios of the traditional BSK medium (rabbit serum, DDT)

2. The Borrelia was grown on a collagen matrix.

3. She found the ideal combination of CO2, humidity, and temperature.

4. Improved sample collection and shipping methods

5. Decrease or removal of EDTA from blood serum samples

6. Improved cultivation due to presence of N-acetyl glucosamine (NAG) during transport of the blood samples.

7. Provided a limited amount of oxygen to the cultures.


The reason, Henry, that this culture method, the Sapi culture method, must be validated is not necessarily because it performed better than any previous method, but because people will trust these results. If those silly, foolish, bed-ridden patients you're talking about think they have chronic Lyme and send their blood to Sapi to see if any spirochetes will grow, they will trust the results. If their blood comes back negative for spirochetal growth, they will believe they are no longer infected with Lyme and move on and try to figure out what are other possibilities for the source of their pain and disability.

If you haven't noticed, Henry, because of the serious lack of attention and care and professionalism by the CDC and IDSA towards patients who suspect they have chronic Lyme disease, there is a corresponding serious lack of confidence in those institutions.

Basically, WE DON'T TRUST YOU.

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

Post by Henry » Sun 30 Nov 2014 14:54

Velvetmagnetta: You speak of trust. Well, let's examine the credentials of Sapi as a microbiologist. She was not trained as a microbiologist and a quick PUBMED check of her publications reveals that those dealing with biofilms and her new culture method are her FIRST efforts in microbiological research. And, they were not pubished in a front-line scientific journal I might add. By contrast, those who do culturing of Borrelia on BSK in state clinical laboratories are trained microbiologist with advanced degrees in microbiology -- and with many peer reviewed publications in the field of microbiology. Many are members of the IDSA and some even work for the CDC. Now, if any of these individuals developed a new -- but unvalidated-- method for culturing Borrelia, would you trust an amateur or someone with demonstrable training and experience in the field of microbiology? As I noted previously, culturing Borrelia on BSK is already a pretty good procedure that has been used with great success by competent microbiologists for many years.

Let's review the history of 2T testing, The bands recommended by the CDC were based on the histogram frequency of certain specific bands for well characterized patient specimens, i.e., specimens obtained from patients who were culture positive and/or at convalescence as well as during ctive infection. Although band 41 (flagellin ) is not specific for Borrelia and is cross reactive for other species of bacteria, it is surely to be generated during a Borrelia infection and should be present; for it not to be present would be strange and extremely unlikely, don't you think?

Lyme disease is no different from any other infectious disease. After 5-6 weeks of infection, significant amounts of IgG antibody should be detectable in blood -- and should be present in convalescent serum after antibiotic treatment as well. So, if a patient has general symptoms that are associated with Lyme disease and is seronegative, would it not be reasonable to assume that their symptoms might just be due to other causes that deserve to be determined and treated in a proper way? But no, that is not the response amongst the Lyme disease activists. They claim that Lyme disease is a "clinical diagnosis" that can be based on symptoms alone, and that 2T testing is "no good". So, in the absence of sufficient proof to support such claims, they seek to discredit the CDC, the IDSA (and their guidelines) and others who support such testing. That is the basis for all this distrust -- that is often disseminated on this website-- that only prevents tangible progress from being made.

So tell me,where should one now go to get reliable advice if all of the real experts on Lyme disease can not be trusted because their view conflict with yours? To amateur microbiologists like Sapi et al.? I challenge you to examine the publication record of the officers of ILADS -- who claim to know so much about Lyme disease-- and see just how many peer reviewed research publications they have on Lyme disease (don't count opinion papers or abstracts). Yes, do a PubMed search and let's examine their credentials . After so doing, you will find that the ILADS crowd "can't hold a candle" to the accomplishments of the authors of the IDSA guidelines, who are truly the international experts on Lyme disease.

duncan
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Joined: Wed 5 Sep 2012 18:48

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

Post by duncan » Sun 30 Nov 2014 15:14

"...some even work for the CDC"? Even for the CDC?? My GOODNESS!!!

"Lyme disease is no different from any other infectious disease." :shock:

"That is the basis of all this distrust." Really? Acts like the highly questionable bifurcation of symptoms in late manifestations of the disease into "major" vs."minor" had nothing to do with it? Or the dismissal of symptoms refractory to treatment - with the exception of arthritic ones in deference to the one who shall remain nameless- as being unrelated to active infection? Or the fact that the diagnostic landscape is hotly disputed for many reasons, not the least of which is that many patients acknowledged with having Lyme continue to be sick after treatment - and instead of deferring to the patient experience, and admitting their diagnostics might be inadequate, just as their recommended treatments can be inadequate, agencies have appointed a new "syndrome" for them? Or the unilateral gov't (in the US) cessation of studies into new treatment options?

Henry, did you write all that with a straight face? Come on, now, be honest. ;)

Henry
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Joined: Thu 10 Nov 2011 18:49

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

Post by Henry » Sun 30 Nov 2014 17:40

Duncan: None of this makes any sense unless you-- or someone else-- can prove that the patients in question really have Lyme disease and not something else that could explain their nonspecific symptoms. It's not a question that these patients have all of these very general and nonspecific symptoms -- what else can it be. Or, when it come to a diagnosis of such patients by a LLMD, being told "Trust me -- I know it when I see it". But, off course that's the main issue isn't it. One that you refuse to accept. In the absence of an objective laboratory test result, how can one diagnose Lyme disease based on nonspecific symptoms alone? Negative test results could mean that there is no Lyme disease, not that the test is "no good" because it doesn't give you the test results that you want. No wonder you and others are not getting better as a result of the various treatments you got or are getting. You are being treated -- perhaps even wrongly-- for the Lyme disease that you do not have. A lot of good it has done you, huh. More sadly, if you don't trust the scientific community and leading research investigators on Lyme disease, who is going to do the research to provide the answers to help you and others like you? Not Horowitz and Burascano et al.; they don't do even clinical research. They just speculate, and get paid for giving the same speech over and over again ad naseum.....
Last edited by Henry on Sun 30 Nov 2014 17:58, edited 1 time in total.

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