Validity of the CDC 2-tiered Test for Late Lyme Borreliosis

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
Henry
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Joined: Thu 10 Nov 2011 18:49

Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Henry » Tue 16 Apr 2013 20:34

Radicale: OK. So you treat such patients with extended antibiotics-- being convinced that they have a persistent infection-- and their symptoms remain. Then what do you do?

radicale
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by radicale » Tue 16 Apr 2013 20:36

No, I would not treat them with extended antibiotics; however, I would also not give up on them. At the very least I would try to determine if they have a missed diagnosis which may be contributing to their overall decline in health. In addition, I would attempt to place them in clinical trials like PLEASE, Autoimmunity Profiling, IVIG or the various ME/CFS university research centres.

Here is a very specific example:
http://www.bcwomens.ca/Services/HealthS ... rogram.htm

Complex Chronic Diseases Program

BC Women’s Hospital & Health Centre is pleased to be hosting this important new program.

This program is for people who suffer from a group of complex chronic diseases which include but are not limited to:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Fibromyalgia Syndrome
Lyme disease
Last edited by radicale on Tue 16 Apr 2013 21:02, edited 5 times in total.

Henry
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Henry » Tue 16 Apr 2013 20:41

Radicale: You would try to get them into a clinical trial? On what basis? All clinical trials are hypothesis based. What would be the hypothesis you wish to test?

radicale
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by radicale » Tue 16 Apr 2013 20:44

Henry wrote:Radicale: You would try to get them into a clinical trial? On what basis? All clinical trials are hypothesis based. What would be the hypothesis you wish to test?
Refer to the edited post above.

Henry
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Henry » Tue 16 Apr 2013 21:02

Radicale: Why not "cut to the chase" and consider the other possibilities mentioned as part of the BC Womens' complex chronic diseases program? That's what I'm getting at -- considering OTHER POSSIBILITIES instead of only Lyme disease when a patient is seronegative. That makes sense to me. Take another look at posibility (a) that I mentioned above.

radicale
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by radicale » Tue 16 Apr 2013 21:08

Henry wrote:Radicale: Why not "cut to the chase" and consider the other possibilities mentioned as part of the BC Womens' complex chronic diseases program? That's what I'm getting at -- considering OTHER POSSIBILITIES instead of only Lyme disease when a patient is seronegative. That makes sense to me.
What chase are you talking about? I absolutely agree that you should consider all of the appropriate possibilities (it is why I included that link) including ME/CFS/Fibromylgia/Cancer/ etc. But I still don't understand why you choose to ignore that late sero-conversion and limited antibody detection due to strain diversity may occur.

edited: changed production to detection.
Last edited by radicale on Tue 16 Apr 2013 21:20, edited 1 time in total.

Henry
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Henry » Tue 16 Apr 2013 21:18

Radicale: What is the evidence that there has ever been a case of late seroconversion and/or limited antibody production due to strain diversity? In either case, it assumes there is a Borrelia infection -- that ought to have responded to antibiotics.

radicale
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by radicale » Tue 16 Apr 2013 21:40

Henry wrote:Radicale: What is the evidence that there has ever been a case of late seroconversion and/or limited antibody production due to strain diversity? In either case, it assumes there is a Borrelia infection -- that ought to have responded to antibiotics.
We are not talking about persistence, nor the lack of presence of antibodies, but rather the cut-off point at which a test is considered positive ie. the patient 'seropositive'. Please stop trying to change the topic we are discussing, it is in-appropriate for a man of your stature.
http://jcm.asm.org/content/35/6/1433.full.pdf
Interpretation criteria for standardized Western blots for three European species of Borrelia burgdorferi sensu lato.
Have a look at Fig. 4 showing the distribution of positive bands with respect to disease presentation for the most prevalent strains in Europe. Even for arthritis patients only 80% have 5 or more bands. For Neuroborreliosis only 20% have 5 or more bands. The authors go on to recommend a positive result if two or more specific bands are found.

You can also find further evidence that strain diversity does indeed effect the detection of antibodies.

Henry
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Henry » Tue 16 Apr 2013 22:13

Radicale: Sorry, my mistake. I acknowledge your point with respect to European borreliosis where there are at least 3 genera involved and much more strain diversity than in the U.S. upon which my comments were based. I think I have said all that I have to say on this topic.

Lorima
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Re: Validity of the CDC 2-tiered Test for Late Lyme Borrelio

Post by Lorima » Tue 23 Apr 2013 14:02

See these threads for more discussion of the two-tier test and alternatives. 

"Virginia Lyme bill"
http://www.lymeneteurope.org/forum/view ... 633#p34882 
This is a long thread with much participation from our IDSA/ALDF representative; here is the opening post: 
RobertF wrote:http://lymedisease.org/news/lyme_diseas ... -bill.html

Is it not ridiculous that this must be forced by law, then something is really wrong.
Under the new legislation, patients being tested for Lyme disease must be officially informed that a negative test result does not mean they don’t have Lyme disease.
YOUR PHYSICIAN HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME DISEASE CAN BE PROBLEMATIC AND STANDARD LAB TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS, AND IF DONE TOO EARLY, YOU MANY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE UNEXPLAINED SYMPTOMS, YOU SHOULD BE RETESTED PERIODICALLY AND YOU SHOULD CONTACT YOUR PHYSICIAN IF YOU HAVE ANY QUESTIONS OR CONCERNS.
"No more Western blot"
http://www.lymeneteurope.org/forum/view ... f=6&t=4762 
This is a shorter, newer thread; here is the opening post: 
panda wrote:On special request a copy of p. 17 "Virginia Lyme bill":
http://www.lymeneteurope.org/forum/view ... t=160#wrap
Re: Virginia Lyme bill
PostPosted: Fri 19 Apr 2013 16:29
by panda
Speaking of things ...

Things are getting better?

Clin Infect Dis. 2013 Apr 16. [Epub ahead of print]
Better Laboratory Testing For Lyme Disease: No more Western blot.
Schoen RT.
Yale University School of Medicine, New Haven, CT.
PMID: 23592831 [PubMed - as supplied by publisher]

http://www.ncbi.nlm.nih.gov/pubmed/23592831

http://cid.oxfordjournals.org/content/e ... it238.long

At the moment there is no abstract, but I expect that it will be added later.
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Re: Virginia Lyme bill
PostPosted: Fri 19 Apr 2013 17:29
by radicale
http://relative-risk.blogspot.ca/2013/0 ... escue.html

They just want to replace the western blot and/or the ELISA with a C6. The paper is a gem, 100% specificity. These guys are really good at showing what they want, when it's appropriate.
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Re: Virginia Lyme bill
PostPosted: Fri 19 Apr 2013 17:37
by phyfe

    panda wrote:Speaking of things ...

    Things are getting better?

    Clin Infect Dis. 2013 Apr 16. [Epub ahead of print]
    Better Laboratory Testing For Lyme Disease: No more Western blot.
    Schoen RT.
    Yale University School of Medicine, New Haven, CT.
    PMID: 23592831 [PubMed - as supplied by publisher]

    http://www.ncbi.nlm.nih.gov/pubmed/23592831

    http://cid.oxfordjournals.org/content/e ... it238.long

    At the moment there is no abstract, but I expect that it will be added later.



This really should be in a thread of it's own, so it stands out. Maybe someone should move it???
"I have to understand the world, you see."
Richard Feynman

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