New doctor wants to treat empirically for Lyme, good idea?

GcMAF Australia

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· High frequency of systemic mycoplasmal infections in Gulf War veterans and civilians with Amyotrophic Lateral Sclerosis (ALS)

Nicolson GL, Nasralla MY, Haier J, Pomfret J.Molecular Biology Laboratory, Department of General Surgery, University Hospital Muenster, Muenster, Germany. J Clin Neurosci. 2002 Sep;9(5):525-9.
 

GcMAF Australia

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· High frequency of systemic mycoplasmal infections in Gulf War veterans and civilians with Amyotrophic Lateral Sclerosis (ALS)

Nicolson GL, Nasralla MY, Haier J, Pomfret J.Molecular Biology Laboratory, Department of General Surgery, University Hospital Muenster, Muenster, Germany. J Clin Neurosci. 2002 Sep;9(5):525-9.
Abstract
The presence of systemic mycoplasmal infections in the blood of Gulf War veterans (n=8) and civilians (n=28) with Amyotrophic Lateral Sclerosis (ALS) and age matched controls (n=70) was investigated by detecting mycoplasma gene sequences with forensic Polymerase Chain Reaction (PCR) and back hybridization with a radiolabeled internal oligonucleotide probe. Almost all ALS patients (30/36 or approximately 83%) showed evidence of Mycoplasma species in blood samples, whereas <9% of controls had blood mycoplasmal infections (P<0.001). Using PCR ALS patients with a positive test for any mycoplasmal infection were investigated for the presence of M. fermentans, M. pneumoniae, M. hominis and M. penetrans in their blood. All Gulf War veterans with ALS were positive for M. fermentans, except one that was positive for M. genitalium. In contrast, the 22/28 civilians with detectable mycoplasmal infections had M. fermentans (13/22, 59%) as well as other Mycoplasama species in their blood, and two of the civilian ALS patients had multiple mycoplasma species (M. fermentans plus M. hominis). Of the few control patients that were positive, only two patients (2/70, 2.8%) were positive for M. fermentans (P<0.001). The results support the suggestion that infectious agents may play a role in the pathogenesis and/or progression of ALS, or alternatively ALS patients are extremely susceptible to systemic mycoplasmal infections.
 

GcMAF Australia

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When Nicolson and fellows examined mycoplasma-positive CFS/ME and FMS patients (~60% of such patients are usually mycoplasma-positive) for the presence of M. fermentans, M. pneumoniae, M. penetrans, M. hominis infections, multiple infections were found in the majority of approximately 100 patients (Nasralla 1999). CFS/ME/FMS patients had two (>30%) or three (>20%) species of mycoplasmal infections, but only when one of the species was M. fermentans or M. pneumoniae (Nasaralla 1999).


This finding was confirmed with higher score values for increases in the severity of signs and symptoms after onset of illness in CFS/ME/FMS patients with multiple infections. Also, CFS/FMS patients with multiple mycoplasmal infections generally had a longer history of illness, suggesting that patients may have contracted additional infections during their illness (Nasralla 1999). ‘Most of these patients also show evidence of various viral and Chlamydia species infections. Thus it is likely that most CFS/ME and FMS patients have multiple bacterial and viral infections’.


In addition Mycoplasma cofactors include Chlamydia, Herpes, Cytomegalovirus, Epstein Barr virus, Rickettsia and others.
 

GcMAF Australia

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Also dont forget even the Lyme medicos can struggle with the reliablity of tests.

http://www.irishtimes.com/life-and-...-raise-awareness-about-lyme-disease-1.2294839

“We were forced outside the country to get sufficient treatment [which we paid for ourselves] so that our now-teenager could have a normal life. Others may not be in the position to do that so we need our Government to fight for sufficient testing and treatment for them.”
Dr Paul McKeown is a specialist in Public Health Medicine with the Health Protection Surveillance Centre (HPSC). He says the condition can be difficult to diagnose.


“Diagnosis of Lyme disease can be challenging, and testing is currently undertaken in most of the larger hospitals in Ireland, with confirmatory testing available from the UK’s Lyme diagnostic service in HPA Porton Down,” he says.

“In general, it is accepted clinical practice in Ireland, the UK, Europe and North America that laboratory confirmation is unnecessary for a confidently made, clinical diagnosis of erythema migrans [a rash associated with Lyme]. For later presentation of the disease, a two-tier system is necessary to ensure that false-positive rates are kept to a minimum.

“Serological testing for antibodies to Borrelia burgdorferi [the spiral-shaped bacterium associated with the condition] is the mainstay of diagnostic testing. There have been significant improvements in antibody testing in recent years, making diagnosis more certain than in the past.”

AND

Reliance on two-tier testing can lead to fatal errors with failure to diagnose or treat.

Kenneth Liegner
 

kungfudao

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Those who have developed alternative testing can arrange for a blinded assessment of their tests. If there testing was shown to hold up under blinded conditions that would make it easier for them to gain research funding.
Its not alternative testing its the same testing done by different people, But they also have much more other testing looking for other things than lyme disease like co infections which no "Traditional, you are depressed doctor" would test for.They also have extra bands for the western blot and cover some European strains. There is not one strain there is 101 in the US and 300 worldwide.
 
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GcMAF Australia

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Its not alternative testing its the same testing done by different people, But they also have much more other testing looking for other things than lyme disease like co infections which no "Traditional,you are depressed doctor" would test for.They also have extra bands for the western blot and cover some European strains. There is not one strain there is 101 in the US and 300 worldwide.
I believe that the strain that the CDC uses is an artificial strain which does not exist in the wild
The variability between strains I believe is enormous
 

duncan

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A little side-bar that I have wondered about from time to time, is how the Head of the Lyme Team at the NIH finds the time to research and publish papers on - of all things - CAEBV, or Chronic Active Epstein Barr Virus?

It is a small world.
 

Esther12

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I would ask Esther12 why is it so important to test positive on an Elisa test before testing the Western Blot .That is the recommendations of the CDC and IDSA. ???

My understanding is that it's intended to cut down on false positives, but it doesn't matter. Even if this testing is totally misguided, that would not be evidence that alternative testing was of any value.

Its not alternative testing its the same testing done by different people, But they also have much more other testing looking for other things than lyme disease like co infections which no "Traditional, you are depressed doctor" would test for.They also have extra bands for the western blot and cover some European strains. There is not one strain there is 101 in the US and 300 worldwide.

Right, but the testing which is providing different results, and being used to claim that different people are positive and negative, needs to show that it's of some value under blinded assessment. That's really all I've been going on about in this thread, it's a reasonable point, and whatever other controversies you bring up won't change that.
 

duncan

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A problem here, @Esther12 , is that you may not be sweeping enough in how you think value should be ensured.

Would you disagree with this statement: Any Lyme testing being used to claim different people are positive and negative, needs to adhere strictly to generally accepted Scientific methods, and integrate specific safeguards that recognize the challenges that are peculiar to Borrelia, e.g. shifting antigenic behavior, multiple strains/species, etc.,?

This should apply to ALL Lyme diagnostics, agreed?

If you do agree, then singling out one group vs another may be inappropriate.
 

Esther12

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Would you disagree with this statement: Any Lyme testing being used to claim different people are positive and negative, needs to adhere strictly to generally accepted Scientific methods, and integrate specific safeguards that recognize the challenges that are peculiar to Borrelia, e.g. shifting antigenic behavior, multiple strains/species, etc.,?

I don't think I do agree with that, although it brings in a lot of things which could be understood/defined in different ways.

I think that a sensible starting point is:

Any testing which claims to be able to help understand a particular cluster of symptoms needs to be able to show an association with those symptoms under a blinded assessment.

That's the simple point which underpins my concerns about alternative Lyme testing: the fact that this testing has not even reached square one on the path to being a useful diagnostic test. Until we get to that point, a lot of the other things are just irrelevant.
 

duncan

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"Any testing which claims, etc..." Nope, that won't cut it. It isn't good enough.

Here is why: The proponents of that B31 strain - and its purported symptoms' cluster - theoretically can maintain that diagnostics that appear sensitive to that single strain apply to all Lyme strains and manifestations. How can that be? In part, because little serious research is being conducted to distinguish strain pathogenicity these days.

Moreover, some of the same researchers who seem to have a fondness for limiting symptoms and strains, are currently in control of most major medical governing bodies relative to Lyme. They get to define which symptoms fit a Lyme diagnosis. Symptoms that they deem unworthy, might fall by the wayside, while those that satisfy their perspective, get embraced.

Let's not forget, too, that thresholds for positive vs negative interpretations are governed by the same select group, as they have been for two decades. The implications are that even for that single strain, B31, infected individuals can be exempt from an accurate diagnosis.

The scary point is that some researchers are arguably in a position where they simply could insist on their definition, and their diagnostic solutions - the very situation I think you objected to earlier.

All testing needs to subscribe to the same basic tenets and protocols throughout the entire test validation process. Any group or company or individual who deviates from good Science anywhere along the way should be exempt form serious consideration.

Period.
 
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Esther12

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All testing needs to subscribe to the same basic tenets and protocols throughout the entire test validation process. Any group or company or individual who deviates from good Science anywhere along the way should be exempt form serious consideration.

Would that mean that you think those promoting alternative Lyme tests have removed themselves from serious consideration?

I keep trying to talk about the evidence for the value of alternative testing, which is what interests me, and you keep seeming to want to use concerns you have about mainstream testing as a substitute for evidence in favour of the value of alternative testing. Even if mainstream testing was pure worthless rubbish that still would not mean that alternative testing was any better.
 

duncan

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Why focus on what you refer to as alternative tests? There is a possible interpretation, when you do so, that tests not-alternative don't suffer from deficits.

Simply apply the entire protocol across the board.

Wouldn't you agree that is fair?
 

Esther12

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Why focus on what you refer to as alternative tests? There is a possible interpretation, when you do so, that tests not-alternative don't suffer from deficits.

Simply apply the entire protocol across the board.

Wouldn't you agree that is fair?

I think that it would be fair to entirely ignore mainstream testing, and only look at the evidence for alternative testing. All testing should be assessed properly, but no one person is going to be able to educate themselves about the assessment of all blood tests: we all have to choose where to spend our limited time.

Also, for mainstream tests, there is some evidence of internal reliability under blinded assessment and an association with Lyme symptoms like a bullseye rash following a tick bite. They're past the first step. Alternative Lyme testing has not even got there. It seems widely acknowledged that there are problems with the reliability of mainstream testing early in an infection, and I'm not sure what other problems there may be - but these potential problems do nothing to indicate that alternative testing is useful.
 

kungfudao

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Some things are irrelevant when the topic is the evidence for validity and accuracy of blood tests.
What About Human Life and suffering Esther. Is That Irrelevant ??? That is What this is really all about. If I remember your Alan Steere study showed that certain tests were equal to, not better than other laboratories. I also haven't seen any research showing why the Elisa must be done before the Western Blot which they are trying to require.That means insurance finds a loop hole not to pay. I would also like to see the research showing that 5 bands is where the bench mark should be set for the Western Blot.
 
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