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» LymeNet Flash » Questions and Discussion » Medical Questions » CDC 2008 Revised Lyme, Ehrlichiosis, RMSF case definition

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Author Topic: CDC 2008 Revised Lyme, Ehrlichiosis, RMSF case definition
pineapple
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The CDC has updated their website to include the revised 2008 case definition of Lyme diseaseand other tick-borne illnesses.


Lyme Disease (Borrelia burgdorferi)
2008 Case Definition

This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.

Clinical presentation

A systemic, tick-borne disease with protean manifestations, including dermatologic, rheumatologic, neurologic, and cardiac abnormalities. The best clinical marker for the disease is erythema migrans (EM), the initial skin lesion that occurs in 60%-80% of patients.

For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing. A single primary lesion must reach greater than or equal to 5 cm in size across its largest diameter. Secondary lesions also may occur. Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM.

For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent. The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.


For purposes of surveillance, late manifestations include any of the following when an alternate explanation is not found:

Musculoskeletal system. Recurrent, brief attacks (weeks or months) of objective joint swelling in one or a few joints, sometimes followed by chronic arthritis in one or a few joints. Manifestations not considered as criteria for diagnosis include chronic progressive arthritis not preceded by brief attacks and chronic symmetrical polyarthritis. Additionally, arthralgia, myalgia, or fibromyalgia syndromes alone are not criteria for musculoskeletal involvement.

Nervous system. Any of the following, alone or in combination: lymphocytic meningitis; cranial neuritis, particularly facial palsy (may be bilateral); radiculoneuropathy; or, rarely, encephalomyelitis. Encephalomyelitis must be confirmed by demonstration of antibody production against Borrelia burgdorferi in the cerebrospinal fluid (CSF), evidenced by a higher titer of antibody in CSF than in serum. Headache, fatigue, paresthesia, or mildly stiff neck alone, are not criteria for neurologic involvement.

Cardiovascular System. Acute onset of high-grade (2nd-degree or 3rd-degree) atrioventricular conduction defects that resolve in days to weeks and are sometimes associated with myocarditis. Palpitations, bradycardia, bundle branch block, or myocarditis alone are not criteria for cardiovascular involvement.


Laboratory evidence

For the purposes of surveillance, the definition of a qualified laboratory assay is (1) a positive culture for B. burgdorferi, (2) two-tier testing interpreted using established criteria [1], or (3) single-tier IgG immunoblot seropositivity interpreted using established criteria [1-4].

Exposure

Exposure is defined as having been (less than or equal to 30 days before onset of EM) in wooded, brushy, or grassy areas (i.e., potential tick habitats) in a county in which Lyme disease is endemic. A history of tick bite is not required.

Disease endemic to county

A county in which Lyme disease is endemic is one in which at least two confirmed cases have been acquired in the county or in which established populations of a known tick vector are infected with B. burgdorferi.

Case classification

Confirmed: a) a case of EM with a known exposure (as defined above), or b) a case of EM with laboratory evidence of infection (as defined above) and without a known exposure or c) a case with at least one late manifestation that has laboratory evidence of infection.

Probable: any other case of physician-diagnosed Lyme disease that has laboratory evidence of infection (as defined above).

Suspected: a) a case of EM where there is no known exposure (as defined above) and no laboratory evidence of infection (as defined above), or b) a case with laboratory evidence of infection but no clinical information available (e.g. a laboratory report).

Lyme disease reports will not be considered cases if the medical provider specifically states this is not a case of Lyme disease, or the only symptom listed is "tick bite" or "insect bite."

References

Centers for Disease Control and Prevention. Recommendations for test performance and interpretation from the Second National Conference on Serologic Diagnosis of Lyme Disease. MMWR MMWR Morb Mortal Wkly Rep 1995; 44:590-1.

Dressler F, Whalen JA, Reinhardt BN, Steere AC. Western blotting in the serodiagnosis of Lyme disease. J Infect Dis 1993; 167:392-400.

Engstrom SM, Shoop E, Johnson RC. Immunoblot interpretation criteria for serodiagnosis of early Lyme disease. J Clin Microbiol 1995; 33:419-27.

Centers for Disease Control and Prevention. Notice to readers: caution regarding testing for Lyme disease. MMWR Morb Mortal Wkly Rep 2005; 54:125-6.

Centers for Disease Control and Prevention. Lyme Disease -- United States, 2003-2005. MMWR Morb Mortal Wkly Rep 2007; 56:573-6.


This page last updated January 9, 2008
United States Department of Health and Human Services
Centers for Disease Control and Prevention

http://www.cdc.gov/ncphi/disss/nndss/casedef/lyme_disease_2008.htm

[ 29. February 2008, 03:35 AM: Message edited by: pineapple ]

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pineapple
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Ehrlichiosis/Anaplasmosis
2008 Case Definition


Clinical presentation
A tick-borne illness characterized by acute onset of fever and one or more of the following symptoms or signs: headache, myalgia, malaise, anemia, leukopenia, thrombocytopenia, or elevated hepatic transaminases. Nausea, vomiting, or rash may be present in some cases. Intracytoplasmic bacterial aggregates (morulae) may be visible in the leukocytes of some patients.

Clinical evidence
Any reported fever and one or more of the following: headache, myalgia, anemia, leukopenia, thrombocytopenia, or any hepatic transaminase elevation.

Laboratory evidence

For the purposes of surveillance,

1. Ehrlichia chaffeensis infection (formerly included in the category Human Monocytic Ehrlichiosis [HME]):

Laboratory confirmed:
Serological evidence of a fourfold change in immunoglobulin G (IgG)-specific antibody titer to E. chaffeensis antigen by indirect immunofluorescence assay (IFA) between paired serum samples (one taken in first week of illness and a second 2-4 weeks later), or

Detection of E. chaffeensis DNA in a clinical specimen via amplification of a specific target by polymerase chain reaction (PCR) assay, or

Demonstration of ehrlichial antigen in a biopsy or autopsy sample by immunohistochemical methods, or

Isolation of E. chaffeensis from a clinical specimen in cell culture.

Laboratory supportive:
Serological evidence of elevated IgG or IgM antibody reactive with E. chaffeensis antigen by IFA, enzyme-linked immunosorbent assay (ELISA), dot-ELISA, or assays in other formats (CDC uses an IFA IgG cutoff of >1:64 and does not use IgM test results independently as diagnostic support criteria.), or

Identification of morulae in the cytoplasm of monocytes or macrophages by microscopic examination.


2. Ehrlichia ewingii infection (formerly included in the category Ehrlichiosis [unspecified, or other agent]):

Laboratory confirmed:
Because the organism has never been cultured, antigens are not available. Thus, Ehrlichia ewingii infections may only be diagnosed by molecular detection methods: E. ewingii DNA detected in a clinical specimen via amplification of a specific target by polymerase chain reaction (PCR) assay.


3. Anaplasma phagocytophilum infection (formerly included in the category Human Granulocytic Ehrlichiosis [HGE]):

Laboratory confirmed: Serological evidence of a fourfold change in IgG-specific antibody titer to A. phagocytophilum antigen by indirect immunofluorescence assay (IFA) in paired serum samples (one taken in first week of illness and a second 2-4 weeks later), or

Detection of A. phagocytophilum DNA in a clinical specimen via amplification of a specific target by polymerase chain reaction (PCR) assay, or

Demonstration of anaplasmal antigen in a biopsy/autopsy sample by immunohistochemical methods, or

Isolation of A. phagocytophilum from a clinical specimen in cell culture.

Laboratory supportive:

Serological evidence of elevated IgG or IgM antibody reactive with A. phagocytophilum antigen by IFA, enzyme-linked immunosorbent Assay (ELISA), dot-ELISA, or assays in other formats (CDC uses an IFA IgG cutoff of ≥1:64 and does not use IgM test results independently as diagnostic support criteria.), or
Identification of morulae in the cytoplasm of neutrophils or eosinophils by microscopic examination.


4. Human ehrlichiosis/anaplasmosis - undetermined:
See case classification

Exposure
Exposure is defined as having been in potential tick habitats within the past 14 days before onset of symptoms. A history of a tick bite is not required.

Case Classification
Confirmed: A clinically compatible case (meets clinical evidence criteria) that is laboratory confirmed.

Probable: A clinically compatible case (meets clinical evidence criteria) that has supportive laboratory results. For ehrlichiosis/anaplasmosis - an undetermined case can only be classified as probable. This occurs when a case has compatible clinical criteria with laboratory evidence to support ehrlichia/anaplasma infection, but not with sufficient clarity to definitively place it in one of the categories previously described. This may include the identification of morulae in white cells by microscopic examination in the absence of other supportive laboratory results.

Suspect: A case with laboratory evidence of past or present infection but no clinical information available (e.g. a laboratory report).

Comment

There are at least three species of bacteria, all intracellular, responsible for ehrlichiosis/ anaplasmosis in the United States: Ehrlichia chaffeensis, found primarily in monocytes, and Anaplasma phagocytophilum and Ehrlichia ewingii, found primarily in granulocytes.

The clinical signs of disease that result from infection with these agents are similar, and the range distributions of the agents overlap, so testing for one or more species may be indicated. Serologic cross-reactions may occur among tests for these etiologic agents.

Four sub-categories of confirmed or probable ehrlichiosis/anaplasmosis should be reported:

1) human ehrlichiosis caused by Ehrlichia chaffeensis,
2) human ehrlichiosis caused by E. ewingii,
3) human anaplasmosis caused by Anaplasma phagocytophilum, or
4) human ehrlichiosis/anaplasmosis - undetermined.

Cases reported in the fourth sub-category can only be reported as ``probable'' because the cases are only weakly supported by ambiguous laboratory test results.

Problem cases for which sera demonstrate elevated antibody IFA responses to more than a single infectious agent are usually resolvable by comparing the levels of the antibody responses, the greater antibody response generally being that directed at the actual agent involved.

Tests of additional sera and further evaluation via the use of PCR, IHC, and isolation via cell culture may be needed for further clarification.

Cases involving persons infected with more than a single etiologic agent, while possible, are extremely rare and every effort should be undertaken to resolve cases that appear as such (equivalent IFA antibody titers) via other explanations.

Current commercially available ELISA tests are not quantitative, cannot be used to evaluate changes in antibody titer, and hence are not useful for serological confirmation.

Furthermore, IgM tests are not always specific and the IgM response may be persistent. Therefore, IgM tests are not strongly supported for use in serodiagnosis of acute disease.

References
Dumler JS. Barbet AF. Bekker CP. Dasch GA. Palmer GH. Ray SC. Rikihisa Y. Rurangirwa FR. 2001. Reorganization of genera in the families Rickettsiaceae and Anaplasmataceae in the order Rickettsiales: unification of some species of Ehrlichia with Anaplasma, Cowdria with Ehrlichia and Ehrlichia with Neorickettsia, descriptions of six new species combinations and designation of Ehrlichia equi and 'HGE agent' as subjective synonyms of Ehrlichia phagocytophila. International Journal of Systematic & Evolutionary Microbiology. 51(Pt 6):2145-2165. Medline UI: 11760958


This page last updated January 9, 2008

United States Department of Health and Human Services
Centers for Disease Control and Prevention

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pineapple
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Rocky Mountain spotted fever (RMSF) (Rickettsia rickettsii)
CDC 2008 Case Definition


Clinical presentation

Rocky Mountain spotted fever (RMSF) is an illness caused by Rickettsia rickettsii, a bacterial pathogen transmitted to humans through contact with ticks. Dermacentor species of ticks are most commonly associated with infection, including Dermacentor variabilis (the American dog tick), Dermacentor andersoni (the Rocky Mountain wood tick), and more recently Rhiphicephalus sanguineus (the brown dog tick). Disease onset averages one week following a tick bite. Age-specific illness is highest for children and older adults.

Illness is characterized by acute onset of fever, and may be accompanied by headache, malaise, myalgia, nausea/vomiting, or neurologic signs; a macular or maculopapular rash appears 4-7 days following onset in many (~80%) patients, often present on the palms and soles. RMSF may be fatal in as many as 20% of untreated cases, and severe, fulminant disease can occur.

Acute illness is best detected by polymerase chain reaction (PCR) and immunohistochemical methods (IHC) in skin biopsy specimens, and occasionally by PCR in appropriate whole blood specimens taken during the first week of illness, prior to antibiotic treatment. Serology can also be employed for detection, however an antibody response may not be detectable in initial samples, and paired acute and convalescent samples are essential for confirmation.

Clinical evidence

Any reported fever and one or more of the following: rash, headache, myalgia, anemia, thrombocytopenia, or any hepatic transaminase elevation.

Laboratory evidence

For the purposes of surveillance,

Laboratory confirmed:
Serological evidence of a fourfold change in immunoglobulin G (IgG)-specific antibody titer reactive with Rickettsia rickettsii antigen by indirect immunofluorescence assay (IFA) between paired serum specimens (one taken in the first week of illness and a second 2-4 weeks later), or

Detection of R. rickettsii DNA in a clinical specimen via amplification of a specific target by PCR assay, or

Demonstration of spotted fever group antigen in a biopsy or autopsy specimen by IHC, or
Isolation of R. rickettsii from a clinical specimen in cell culture.

Laboratory supportive:

Has serologic evidence of elevated IgG or IgM antibody reactive with R. rickettsii antigen by IFA, enzyme-linked immunosorbent assay (ELISA), dot-ELISA, or latex agglutination.

Note: Current commercially available ELISA tests are not quantitative, cannot be used to evaluate changes in antibody titer, and hence are not useful for serological confirmation. IgM tests are not strongly supported for use in serodiagnosis of acute disease, as the response may not be specific for the agent (resulting in false positives) and the IgM response may be persistent. Complement fixation (CF) tests and other older test methods are neither readily available nor commonly used. CDC uses in-house IFA IgG testing (cutoff of ≥1:64), preferring simultaneous testing of paired specimens, and does not use IgM results for routine diagnostic testing.

Exposure

Exposure is defined as having been in potential tick habitats within the past 14 days before onset of symptoms. A history of a tick bite is not required.

Case Classification

Confirmed: A clinically compatible case (meets clinical evidence criteria) that is laboratory confirmed.

Probable: A clinically compatible case (meets clinical evidence criteria) that has supportive laboratory results.

Suspect: A case with laboratory evidence of past or present infection but no clinical information available (e.g. a laboratory report).

This page last updated January 9, 2008

United States Department of Health and Human Services
Centers for Disease Control and Prevention

http://www.cdc.gov/ncphi/disss/nndss/casedef/rocky2008.htm

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Robin123
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So what options does anyone have to appeal any of this?

My few humble comments:

The EM rash appears in approx 20-30%, not 60-80%.

Fibromyalgia not a criteria? Just what do they think fibro is? Mine clearly responded to clindamycin, when fibro pain went to zero in one week after 25 years of muscle pain following a known tick bite.

Stiff neck occurred one year later after the tick bite. In my case, one of my Lyme symptoms.

How reliable is the CSF test for finding antibodies to Bb?

Endemic areas? A bird could drop a tick anywhere.

And this quote? "Lyme disease reports will not be considered cases if the medical provider specifically states this is not a case of Lyme disease." Good one. I declare that the sun doesn't rise or set and that we have no day or night. Because I declare it to be so. What a game.

So who has the power to do something about all this?

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Tincup
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They are so so so wrong!

How many have to suffer and die before they will admit they were wrong and get out of the way so real science can take over?

IDIOTS!

My opinion of course.. but my bet is there are some others that will agree.

Their conclusions are so flawed I won't even waste time pointing the errors out to anyone.

And I am working on a paper now that shows how outdated their "stuff" is. They may not listen... but the public will and the medical community will. No one I know believes them anymore.

Idiots!

[Mad]

PS.. Thanks Pinapple for posting this. You just gave me enough spunk to stay up and keep working.

[Big Grin]

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KS
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Ugh, this is frustrating. My biggest issue is the lack of scientific literature with regard to serological testing for those with chronic Lyme disease.

I think at some point we all are going to need to band together and bombard the CDC with letters, including test results for those of us who can disprove many of their statements.

For example, I was ELISA negative but IgM positive (band 23, 39 AND 41 were positive) and due to my limited ELISA and IgG response (considering the length of time I've been sick), I have an email from them stating that I do not have LYme.

Well, I will test again until I get the IgG response and then will send them my test results along with their correspondence. Unfortunately, they will only 'speak to' data unless we get 'lucky enough, to have someone at the top have a personal encounter with this awful disease.

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adamm
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It's not at all like the [email protected][email protected]&ds at the CDC don't know what's up--

they more or less created this thing, after all.

Sending them letters would be a bit like pleading with Hannibal

Lecter...

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lou
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Here is a previous version of the lyme case definition:

Lyme Disease (Revised 9/96) Clinical description

A systemic, tickborne disease with protean manifestations, including dermatologic, rheumatologic, neurologic, and cardiac abnormalities. The best clinical marker for the disease is the initial skin lesion (i.e., erythema migrans {EM}) that occurs in 60%-80% of patients.

Laboratory criteria for diagnosis

*

Isolation of Borrelia burgdorferi from a clinical specimen or
*

Demonstration of diagnostic immunoglobulin M or immunoglobulin G antibodies to B. burgdorferi in serum or cerebrospinal fluid (CSF). A two-test approach using a sensitive enzyme immunoassay or immunofluorescence antibody followed by Western blot is recommended (7).

Case classification

Confirmed: a) a case with EM or b) a case with at least one late manifestation (as defined below) that is laboratory confirmed.

Comment

This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis.

Definition of terms used in the clinical description and case definition:

*

Erythema migrans. For purposes of surveillance, EM is defined as a skin lesion that typically begins as a red macule or papule and expands over a period of days to weeks to form a large round lesion, often with partial central clearing. A single primary lesion must reach greater than or equal to 5 cm in size. Secondary lesions also may occur. Annular erythematous lesions occurring within several hours of a tick bite represent hypersensitivity reactions and do not qualify as EM. For most patients, the expanding EM lesion is accompanied by other acute symptoms, particularly fatigue, fever, headache, mildly stiff neck, arthralgia, or myalgia. These symptoms are typically intermittent. The diagnosis of EM must be made by a physician. Laboratory confirmation is recommended for persons with no known exposure.
*

Late manifestations. Late manifestations include any of the following when an alternate explanation is not found:
1.

Musculoskeletal system. Recurrent, brief attacks (weeks or months) of objective joint swelling in one or a few joints, sometimes followed by chronic arthritis in one or a few joints. Manifestations not considered as criteria for diagnosis include chronic progressive arthritis not preceded by brief attacks and chronic symmetrical polyarthritis. Additionally, arthralgia, myalgia, or fibromyalgia syndromes alone are not criteria for musculoskeletal involvement.
2.

Nervous system. Any of the following, alone or in combination: lymphocytic meningitis; cranial neuritis, particularly facial palsy (may be bilateral); radiculoneuropathy; or, rarely, encephalomyelitis. Encephalomyelitis must be confirmed by demonstration of antibody production against B. burgdorferi in the CSF, evidenced by a higher titer of antibody in CSF than in serum. Headache, fatigue, paresthesia, or mildly stiff neck alone are not criteria for neurologic involvement.
3.

Cardiovascular system. Acute onset of high-grade (2nd-degree or 3rd-degree) atrioventricular conduction defects that resolve in days to weeks and are sometimes associated with myocarditis. Palpitations, bradycardia, bundle branch block, or myocarditis alone are not criteria for cardiovascular involvement.
*

Exposure. Exposure is defined as having been (less than or equal to 30 days before onset of EM) in wooded, brushy, or grassy areas (i.e., potential tick habitats) in a county in which Lyme disease is endemic. A history of tick bite is not required.
*

Disease endemic to county. A county in which Lyme disease is endemic is one in which at least two confirmed cases have been previously acquired or in which established populations of a known tick vector are infected with B. burgdorferi.


Note: this came from the CDC website
http://www.cdc.gov/mmwr/preview/mmwrhtml/00047449.htm

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lou
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It looks like one of the changes is addition of more elements in the case classification. The older version has only a confirmed case, whereas the new one has probable and suspected. Would this not be an improvement?

Need to spend some time analyzing the differences between these two.

OK, a superficial comparison also shows these changes from the 1996 version:

--the percentage of patients with EM rash was added to the new definition (however they are still requiring large EM rashes, ignoring the Steere paper on vaccine study that showed the large EM was atypical.)

--they seem to be saying a positive lab test can consist of results of two tier system, a culture +, OR a positive IgG result on WB. This last one would be an improvement as it bypasses the ELISA as the first screen. They also added the words again that show these lab results are for surveillance purposes (not for clinical cases in a doctor's office, although they don't say specifically that clinical diagnosis is accepted. But this whole case definition thing is for surveillance. The problem is that ins cos and IDSA and ignorant doctors are using surveillance criteria inappropriately.

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Tincup
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"Sending them letters would be a bit like pleading with Hannibal Lecter..."

HA! I got my morning laugh! Thanks adddammm!

[Big Grin]

lou...

I did what you are doing (detailed comparisons) before we went to Atlantic City for that protest.

The "added" definitions you mentioned are not much of a help at all.. and make it worse actually.

They were trying to make the reporting process easier for the health dept employees. That was one of their goals.

It will hurt us as far as numbers go.

If they don't have all the information on the report from the physicians .... or can't find the lab report ... where they normally were required to find it... they can toss the cases into lesser catagories which are not "confirmed cases".

You will remember in Maryland when Baltimore County was reporting 2-3 cases a year? Once I got the legislators looking into it.. the numbers came up to over 200 plus a year (approx).

BUT.. we lost who knows how many because they claimed they didn't have enough people to do the work!

This definition also lessens numbers because if the lab report isn't up to the strictest standards they've set, it won't count as a "confirmed" case.

The last catagory doesn't even get reported... so it is more like an offical "waste basket."

BUT... if we try to refute this stuff.. the standard answer will be that this is a "case definition for surveillence purposes only".

We know that is a bunch of hooey... but that is what they will claim. As a matter of fact.. that definition was proposed and adopted to bring it closer to the IDSA guidelines which we are being treated by... and insurance is paying for.

One hand washing the other.

There is another change in the IGG and IGM. If I remember right.. the case definition once accepted either if they were positive.. but now it doesn't. So that knocks out a lot of confirmed cases too.

I wish more folks would have joined us in the protest in Atlantic City and we could have gotten this stopped.

Now we have to live with it.

And the other TBD's are worse too now.

[Big Grin]

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www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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doc
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That was my though also lou, seems slightly looser on the classifiation . better than going the other way. (I guess) maybe more cases counted. Doc
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Tincup
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"OR a positive IgG result on WB. This last one would be an improvement as it bypasses the ELISA as the first screen."

But it also HAD both IGG and IGM... now it is only one.

I am just waking up... so excuse my slowness and commenting in bits and pieces as my memory kicks in gear.

[Big Grin]

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www.LymeDoc.org

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lou
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Well, I guess my attempt to find some good news in this was too optimistic. Can't win for losing? The pro's in a field will always have the advantage over the amateurs as they know how to game the system to come up with the result they want. Guess the only real meaningful change will be in the personnel who are in charge of public health programs like lyme, getting people who actually care and are honest. If, for instance, Fauci changed his mind or was replaced by someone more enlightened on Lyme, that would take NIH in a good direction.

Some of the bad guys were booted at CDC, not sure what the current situation is, as they are trying to get the director fired.

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doc
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OO not good . read tc,s post after i posted . Doc.
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lou
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Well now, I am looking at the CDC advice on diagnosis, which will be posted below. It says if ELISA negative, then no further testing needed. So, if they eliminate that step in surveillance, it still seems to be good to me. And I can't see that the change to IgG WB is worse, because they are saying that a positive IgM without IgG was a false positive and to discard the results or retest. So that is another roadblock removed, right?

However, it does not deal with people whose immune systems stop making antibodies or whose antibodies switch back to IgM, as they apparently sometimes do in late stage lyme (and more than one other disease). Or people who have strains that don't match the ones used in lab test kits.

Here is some CDC stuff on lyme, but I think it does not necessarily match the case definition material, because one is for surveillance and the other is for diagnosis in a clinical situation. As you can see, it is not enlightened, and in fact looks like their advice on diagnosis in a clinical situation is actually worse than the surveillance criteria! So, when are they going to revise the diagnosis stuff? And add clinical diagnosis?

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

CDC recommends a two-step process when testing blood for evidence of Lyme disease. Both steps can be done using the same blood sample.

1) The first step uses an ELISA or IFA test. These tests are designed to be very "sensitive," meaning that almost everyone with Lyme disease, and some people who don't have Lyme disease, will test positive. If the ELISA or IFA is negative, it is highly unlikely that the person has Lyme disease, and no further testing is recommended. If the ELISA or IFA is positive or indeterminate (sometimes called "equivocal"), a second step should be performed to confirm the results.

2) The second step uses a Western blot test. Used appropriately, this test is designed to be "specific," meaning that it will usually be positive only if a person has been truly infected. If the Western blot is negative, it suggests that the first test was a false positive, which can occur for several reasons. Sometimes two types of Western blot are performed, "IgM" and "IgG." Patients who are positive by IgM but not IgG should have the test repeated a few weeks later if they remain ill. If they are still positive only by IgM and have been ill longer than one month, this is likely a false positive.

CDC does not recommend testing blood by Western blot without first testing it by ELISA or IFA. Doing so increases the potential for false positive results. Such results may lead to patients being treated for Lyme disease when they don't have it and not getting appropriate treatment for the true cause of their illness. For detailed recommendations for test performance and interpretation of serologic tests for Lyme disease, click here.

http://www.cdc.gov/NCIDOD/DVBID/lyme/ld_humandisease_diagnosis.htm

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Robin123
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I would imagine that many, if not most, people with positve IgM and/or IgG Western blot tests test negative on an ELISA?

I had the two Western blot tests done first and came back positive on the IgG one.

Then, while I was successfully treating with clindamycin(symptoms going down, and herxing), an ELISA test was done, which came back negative.

Known tick bite, known years of symptoms following the tick bite, positive IgG test, great response to clinda, herxing.

What the CDC says about doing an ELISA first and if it's negative, to not do any further testing, would be completely incorrect in my case.

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Tincup
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Lou said...

"It says if ELISA negative, then no further testing needed. So, if they eliminate that step in surveillance, it still seems to be good to me."

I worked on this so hard and so deep a while back I thought my head would explode. It can make you nuts... which MAY be the only purpose for it after all. HA!

So I ask lou.. is this a mis-typed part you posted above... or am I just totally confused?

I know that YOU know NOT to stop with just an ELISA when trying to determine if someone has Lyme... but you say it is a good thing if they do???

I am sitting here going, HUH?

So help! Am I mis-reading that? It wouldn't be the first time for me!

Thanks!

[Big Grin]

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Greatcod
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"This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis".

The saving grace of the CDC position, if doctors bother to read the details. which they don't.

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daise
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Yaaaa .... but, just like before, it's going to be taken as a standard.

Once again, Lyme (and co-infections) patients got socked in the stomach.

I am outraged! Again ...

daise [Smile]

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lou
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Tincup, you must have typed this past your bedtime. Now, of course, I didn't mean that, silly girl! In the past, the two step testing process advocated for surveillance purposes said stop testing if ELISA negative. Bad, led to people getting no treatment when false neg on ELISA. Now the new case def says a one step of positive IgG WB is also acceptable. This skips the ELISA and the possibility of false neg stopping before the WB was done.

There are still a lot of things to worry about, but I am thinking that having a way to bypass ELISA, which is new in the case def, is a good thing. No?

And when it comes to heads exploding, mine does that regularly, especially when I try to understand immunology.

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tickled1
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Ok, now I'm really mad! I just had my daughter tested! Her pediatrician ordered ELISA and WB. She thought the fact that she specifically requested it that way that they would do it but after taking 5 tubes of blood from my little 24 lb. girl they did the ELISA and would not proceed to the WB b/c it was negative.

So what I'm to understand from this is that if she skipped the ELISA and just requested the WB they would have done it?!!!! [cussing]

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lymewreck36
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Hey Tincup:

I have also been working on an article, but I have to say that I feel very humbled in this forum with all the great minds here that post. I would be very interested in seeing your article, and wonder if I could pass mine on to you in a private post for your feedback.

I know that is a lot to ask, but if you feel you could take a look at it sometime, please let me know. It has a lot of links, and I would like to know if you have better links, and so forth.

Well, there are so many people in here that know so much more than I do.

Regarding the CDC stuff, could they has relaxed, every so slightly, there criteria because of Blumenthal's investigation?

Perhaps they need that loop hole so they do not have liability?

Just a thought.

Mary

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Robin123
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Yes, Laura. I suggest you find an LLMD and get the Western blot tests done.
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daise
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I agree. Please.

daise [Smile]

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bettyg
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outstanding find; great job pineapple! [bow]
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bettyg
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up for others to be aware of major changes from CDC made....
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Tracy9
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Does "known exposure" mean I have to have seen the actual tick in the spot with the rash?

--------------------
NO PM; CONTACT: [email protected]

13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG.

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