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

[Undisclosed]

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.

Of course human life and suffering is relevant. Wasn't that asked and answered previously?

Can we not just discuss the tests without getting into accusing a member of not caring about the whole human race

 

[Esther12]

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.

None of those potential reasons for concern about mainstream testing are any reason to think that alternative testing is valuable and none of that would stop alternative doctors and labs from conducting the sort of blinded assessment of their testing that is needed to show it's value.

I want patients to be treated better.

 

[duncan]

Actually, @Kina , it appears to me that @Esther12 could be interpreted as having suggested human suffering might be irrelevant to the discussion. Please check earlier in this thread at post #262.

The nature of the complaints of human suffering associated with deficits in current testing is entirely relevant when someone is suggesting scrutiny should only be levied at a certain group of tests.

The unilateral and decidedly one-sided nature of criticisms of a category of diagnostics may make many uncomfortable, not just those knowledgeable about Lyme controversies.

 

[Esther12]

someone is suggesting scrutiny should only be levied at a certain group of tests.

Who has been foolish enough to say this?

 

[MadeleineKM]

I dont want to discuss the accuracity of the Lyme tests but in our country with the officially hospitals and doctors who is under the state of the country and mainstream(hope this is understandable) we have several tests where the doctors say negative cant always be trusted if you have the symptoms. In testing for the Borrelia you cant only use blindfolded studys to proof the accuracy of the test since healthy people can have the strains too. As my Belgian doctor suggests, you need to take a lot more tests to proof and see the illness in the body as immune tests, cytokines, inflammation tests etc. This will give a better picture. They already has seen in ME studies ME pasients have unnormal results in some of the cytokins, this can be used together with bacteria tests I think but this is my opinion from the reading I have done

 

[Undisclosed]

Actually, @Kina , it appears to me that @Esther12 could be interpreted as having suggested human suffering might be irrelevant to the discussion. Please check earlier in this thread at post #262.

The nature of the complaints of human suffering associated with deficits in current testing is entirely relevant when someone is suggesting scrutiny should only be levied at a certain group of tests.

The unilateral and decidedly one-sided nature of criticisms of a category of diagnostics may make many uncomfortable, not just those knowledgeable about Lyme controversies.

The only thing that makes me uncomfortable is that members have to resort to personal comments rather than to actually discuss the questions that have arisen.

 

[Esther12]

In testing for the Borrelia you cant only use blindfolded studys to proof the accuracy of the test since healthy people can have the strains too.

But if they've not shown that a positive result is more likely in those with symptoms than those without, then there is no reason to think that a positive result helps explain the symptoms.

 

[duncan]

That applies to all tests, not merely "alternative testing."

 

[kungfudao]

Of course human life and suffering is relevant. Wasn't that asked and answered previously?

Can we not just discuss the tests without getting into accusing a member of not caring about the whole human race

I thought the original topic was,new doctor Wants to treat Empirically for lyme ,and anything relevant to that. I asked a Question relevant to that. If it was brought up before,sorry my photographic memory comes and goes, but human suffering is a direct result of testing requirements.

 

[Esther12]

That applies to all tests, not merely "alternative testing."

Yes.

 

[duncan]

Ah. But I thought you were an advocate for turning a blind eye to mainstream testing - ignoring it, I think is how you worded it, if I might paraphrase.

 

[Esther12]

Ah. But I thought you were an advocate to turning a blind eye to mainstream testing - ignoring it, I think is how you worded it, if I might paraphrase.

I said:

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.

In no way does that mean that I think standards should be lower for mainstream testing than any other sort.

 

[kungfudao]

But if they've not shown that a positive result is more likely in those with symptoms than those without, then there is no reason to think that a positive result helps explain the symptoms.

ILADS Position Paper on the CDC's statement Regarding Lyme Diagnosis QUOTE:
http://anapsid.org/lyme/panel/ILADS Position Paper.pdf (people have said there was no research in regaurds to lyme testing, I posted the 100 or so research refferences and was told it was to much. Soo I have deleted the references, but if you want to see them the link is above underlined.
ILADS’ Position Paper on the CDC’s Statement Regarding Lyme Diagnosis International Lyme & Associated Diseases Society www.ilads.org The Center for Disease Control’s (CDC) position on diagnosing Lyme disease (LD) is an oversimplification of a complicated clinical condition.1 The CDC’s two-tiered approach— using an ELISA and confirming positives by both IgM and IgG Western blots— potentially misses more than 40% of the patients. One year after the tick bite, this percentage may be greater than 50%. The two-tiered protocol was developed from studies using Lyme patients presenting with the Erythema Migrans (EM) rash and arthritis or neuro-borreliosis. However, not all Lyme patients have these symptoms. In one of the NIH-sponsored studies, blood was taken from Lyme-suspected patients every two weeks for a period of four months, and any positive event (defined by the presence of 5 of the 10 bands by IgG Western blot) qualified the patient.2 In contrast, other NIH-sponsored research indicated that many defined Lyme patients did not meet the CDC Western blot criteria (the presence of 5 of the 10 bands), and that the IgM response was a useful predictor of infection at all stages of disease.3, 4 Lyme disease is a problematic diagnosis. The position adopted by the CDC makes it more complicated. Many patients do not elicit an antibody response great enough to be positive by currently available ELISA assays. In fact, studies conducted by the group responsible for Lyme Disease proficiency testing for the College of American Pathologists (CAP) concluded that the currently available ELISA assays for Lyme Disease do not have adequate sensitivity to be part of the two-tiered approach of the CDC/ASPHLD, where only ELISA-positive samples can be tested by Western blotting.5 Furthermore, if patients are treated early with antibiotics, their antibody response may be reduced or curtailed.6 In addition, initial mild flu-like symptoms may be overlooked. Later, if the symptoms return, most of the antibody markers may have disappeared. Aguero-Rosenfeld et al. showed that only 70% of the documented Lyme patients in their study had a significant antibody response.3, 4 They suggested that the degree of antibody response might be related to the length of time the EM rash persists. They also reported only a 64% rate of IgM to IgG seroconversion. The reason that most ELISA assays are inadequate as screening tests is that they were not designed by the manufacturers to be sensitive at the 95% confidence level, the level typically required for screening.5 In fact, Luger and Krause found up to a 56% falsenegative rate (depending upon the commercial kit), when compared to their clinical diagnoses.7 Golightly et al. observed a lack of sensitivity (over a 70% false-negative rate) with commercial kits in early Lyme disease and from 4 to 46% with late manifestations of Lyme disease.8 Thus, independent of the ELISA results, using both IgM and IgG Western blots may improve laboratory detection of LD. ILAD's Position Paper on the CDC's Statement Regarding Lyme Diagnosis Page 2 The immunoblot or Western blot is the most useful antibody test for B. burgdorferi, when performed in a quality laboratory by experienced testing personnel. It is necessary to evaluate both IgM and IgG antibodies to B. burgdorferi. Studies by Ma, et al. and others point out the large degree of antibody variability in patients with clinically confirmed Lyme disease, including patients with physician-diagnosed EMs.9 Variability in the Western blot reflects the variability observed in the immune response of other diseases, including Hashimoto’s thyroiditis, SLE, Sjögren’s syndrome, and scleroderma. Some studies show that it is common to miss patients if only the CDC serological criteria are used.3, 4 Indeed, the CDC/ASPHLD criteria for a positive B. burgdorferi Western blot are very conservative.1 Five of ten antibody bands are required for IgG positivity. This cut-off is based on the assumption that all Lyme patients, even those without arthritis and neuroborreliosis, have similar immune systems and responses. The diversity of the immune response seen in other diseases is also disregarded. The CDC’s studies were problematic in that they primarily focused on patients with early Lyme disease (usually within four months of an EM). They also collected blood in most patients every few weeks during this four-month period and counted any positive event (five out of ten bands) as LD, even if the same patient had a negative test at a different time of the study.2 Engstrom et al.2 and Aguero-Rosenfeld et al.3, 4 confirmed that almost one-third of all Lyme patients are IgG negative during the first year. Two years after a physiciandiagnosed EM, 45% of the patients were negative by ELISA. In another study, AgueroRosenfeld et al. showed that the ELISA response declined much more rapidly than the Western blot response.4 Their study also demonstrated that the two-step protocol of the CDC/ASPHLD criteria would fail to confirm infection in some patients with culture-proven EM. Furthermore, although a majority (89%) of patients with the EM rash developed IgG antibodies by Western blot sometime during disease, only 22% were positive by the criteria of the CDC/ASPHLD.4 The Engstrom et al. study did not use the IgG blot criteria of the CDC/ASPHLD. 2 They found that 2 of 5 bands gave them a specificity of 93 to 96% and a sensitivity of 100% in the 70% of patients that produced antibody. This could imply an even lower sensitivity would be obtained had the more stringent CDC/ASPHLD criteria been used as a guideline for laboratory screening. The CDC/ASPHLD criteria for a positive IgM Western blot include the 23-25 kDa (OspC), the 39 kDa and the 41 kDa, but overlook the 31 kDa (OspA) and the 34 kDa (OspB). 1, 10 Yet the CDC reported a specificity of 95% for the IgM Western blot, based on several hundred negative controls. Engstrom et al. reported specificities of their IgM Western blot to be between 92 and 94%.[2] Some studies have suggested that the IFA and ELISA IgM assays may cross-react with ANA, EBV and other spirochetal infections,11 while other studies did not observe this with either IFA or Western blot.9,12 ILAD's Position Paper on the CDC's Statement Regarding Lyme Diagnosis Page 3 A major disagreement with the CDC/ASPHLD group arises from its statement that the IgM Western blot should be used only during the first month after tick bite. They have seemingly overlooked their own reported excellent specificity of the IgM Western blot. Studies by IGeneX, 13 Steere’s group,14 and Jain et al.15 emphasized the importance of the IgM Western blot in recurrent and/or persistent disease. Sivak et al. found that the IgM Western blot had a specificity of 96% if the patients surveyed had at least a 50% probability of having Lyme disease.16 It is important to note that a positive Western blot, to IgG and/or IgM antibodies, merely implies exposure to B. burgdorferi. The Western blot is only part of the test battery and is not, by itself, confirmatory for Lyme disease. One cannot conclude from Western blot results that a patient has Lyme disease, because that requires a clinical diagnosis. It must also be kept in mind that these antibody tests are not static but in fact change over time. Thus, a patient negative by the Western blot may seroconvert to a positive blot with treatment. Conversely, a patient positive for IgG response may develop another IgM response, suggestive of a recurrent infection. A considerable body of literature demonstrates that some seronegative Lyme patients are positive for either the Lyme bacteria DNA or pieces of the unique Borrelia outer surface antigens. Studies by Goodman et al. found that 30% of their patients with early Lyme disease were positive by PCR.17 This percentage is comparable to blood culture data by others.18 However, some studies could not obtain positive cultures or positive PCR from patients with acute Lyme disease.19 Both of these methods are technique-dependent. Manak et al. were able to detect 33% of early Lyme and 50% of late stage Lyme disease in patients not on antibiotic therapy.20 Most of their patients became PCR negative within two weeks of antibiotic therapy. They also found that during a relapse, patients might become PCR positive for a short period of time. On the other hand, using a combination of genomic and plasmid PCR, Bayer et al. found that 74% of patients with chronic (persistent) Lyme disease were PCR positive in urine samples.21 Persistent/recurrent (chronic) infection is a unique diagnostic problem because the IgG response may be absent in more than 50% of the patients.2,3 ,4 Thus in addition to the IgG Western blot, an IgM Western blot should be used. Assays that focus on antigen detection or DNA may be particularly useful diagnostically during persistent/recurrent disease.22 B. burgdorferi antigens in urine have been detected in animal models with Lyme disease.23,24,25 Similarly, B. burgdorferi antigen in urine has been seen in humans and appears to be a useful diagnostic tool.23,24,22 Data extrapolated from vaccine studies and CDC lectures suggest that the number of patients with Lyme Disease may be ten-fold higher than what is being currently reported. In spite of this, the CDC seems to be more concerned with diagnostic criteria that prevent false positives, with little concern for false negatives. A system with better balance in regard to this issue is urgently needed for accurate statistics concerning the magnitude of the number of patients with Lyme disease. ILAD's Position Paper on the CDC's Statement Regarding Lyme Diagnosis Page 4 References 1. Association of State and Territorial Public

 

[duncan]

Entirely ignoring a group of tests pretty much can be interpreted as giving them a green light to do as they please - especially when I repeatedly suggested both mainstream tests and alternative tests be subjected to the same scientific protocol rigor. Wasn't it your primary contention recently that only alternative tests deserve scrutiny, and a specific type of scrutiny relative to blinded testing? When I suggested all tests by every vested or potential diagnostic entity be subjected to the same standards and demands, you seemed to balk.

Hey. Everybody can read what has transpired. They can interpret your position without my interference or influence, @Esther12 .

 

[Esther12]

Entirely ignoring a group of tests pretty much can be interpreted as giving them a green light to do as they please - especially when I repeatedly suggested both mainstream tests and alternative tests be subjected to the same scientific protocol rigor. Wasn't you primary contention that only alternative tests deserve scrutiny, and a specific scrutiny?

Hey. Everybody can read what has transpired. They can interpret your position without my interference or influence.

No. Nowhere have I said anything like this.

There are lots of blood tests that you completely ignore, that you have no interest in and know nothing about. That doesn't mean that you do not think that they deserve scrutiny, does it? Everyone has a limited amount of time, and chooses to examine the evidence in some areas but not others.

 

[duncan]

"I think it would be fair to entirely ignore mainstream testing, and only look at the evidence for alternative testing."

Personally, I think that bears repeating. The first time I quoted part of that sentence, you "liked" my post, so you appear to stand by that position.

I have tried to be fair. To observe that all tests need to be approached, measured and validated the same way is about as fair as one can get, imo.

 

[Esther12]

"I think it would be fair to entirely ignore mainstream testing, and only look at the evidence for alternative testing."

Personally, I think that bears repeating. The first time I quoted part of that sentence, you "liked" my post, so you appear to stand by that position.

I have tried to be fair. To observe that all tests need to be approached, measured and validated the same way is about as fair as one can get, imo.

I stand by what I said there. Saying that it's fine for someone to look at the evidence for one type of testing without having a responsibility to look at the evidence for every other type of testing is not the same as saying that standards should be lowered for all other types of testing.

As I said:

There are lots of blood tests that you completely ignore, that you have no interest in and know nothing about. That doesn't mean that you do not think that they deserve scrutiny, does it? Everyone has a limited amount of time, and chooses to examine the evidence in some areas but not others.

 

[duncan]

Not if they want to debate the merits of different tests in a public forum, or persecute an entire genre of diagnostics. If they wish to do this - which they have every right to - I suggest they be open-minded, and come informed.

Otherwise, a person adopting the position you appear to be advocating (i.e, come informed only about a limited set of relevant data points) needs to be prepared to look like they don't have a great deal of knowledge concerning the subject, or have a bias, or enjoy baiting. I'm not saying these apply to you, only it's a risk for anyone that adopts the approach you just proposed in the post above this.

 

[Esther12]

Not if they want to debate to merits of different tests in a public forum. If they wish to do this - which they have every right to - I suggest they be open-minded, and come informed.

Otherwise, a person adopting the position you appear to be advocating needs to be prepared to look like they don't know what they're talking about, or have a bias, or enjoy baiting. I'm not saying these apply to you, only it's a risk for anyone that adopts the approach you just proposed i the post above this.

I said:

"I think it would be fair to entirely ignore mainstream testing, and only look at the evidence for alternative testing."

not:

"I entirely ignore mainstream testing and only look at the evidence for alternative testing."

I've already posted papers about mainstream testing. I'm not that interested in a lot of the debates around mainstream testing, but I am interested in evidence as to whether it has been shown to be of some value.

 

[kungfudao]

The only thing that makes me uncomfortable is that members have to resort to personal comments rather than to actually discuss the questions that have arisen.

Respectfully, I am not asking the question on a personal level ,I am asking if human suffering would be a consequence of following the proposed steps in question.