-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I truly believe that this is the test to get. I have been waiting on it. I will be sending mine off next week.
Dr. B says that this test will become the gold standard in testing at some point. I trust that he is right.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I think it off Abx at least one month - but verify. Also off any other herbs etc that might effect the test.
The doctor has to order the test kit - unlike Igenex where the patient can order - the kit mailed to patient - to take to the doctor for signatures etc.
My GP did this for me. I could tell that she was ready to refuse until I mentioned that Cornell Univ. now has their new LD/Bb test out for animals. Cornell no longer does antibody tests for LD/Bb. ***corrected - see below (see my posts about this with links to Cornell) I mentioned that finally a new test is now available for humans.
Advanced Lab does not take insurance. I requested a receipt to file with my insurance. They - at least a few weeks ago - did not have an insurance code for the Bb test. Maybe I will wait a few months and ask again and then file. The CPT code I was given was 87999 - which I think is for general bacterial cultures. I don't really know if insurance companies will accept it.
Also - if you have a doctor that will order the test kit but cannot draw blood in the office - one can go to Labcorp with the orders and they will draw the blood and send the pre-paid kit/etc back to Advanced. They call this a "courtesy" blood draw - perhaps is only done when patient is anyway at Labcorp with other tests performed by Labcorp.
There are certain days to have the blood drawn and sent out overnight that same day. I think an afternoon draw is preferred.
Again, please check all this beforehand.
***The Cornell test is an antibody test. I had misunderstood. It is similar but different than Elisa and Western blots.***
posted
I had this test done too in Dec. 2011: positive for Bb spirochetal growth in my blood.
For me, it was worth the $. I haven't yet attempted to take it up with my insurance company.
Posts: 331 | From West Coast | Registered: Jan 2012
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Has anyone gotten a negative on this culture test? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I HOPE that this test is accepted soon by "the powers that be." I say that, because, according to them, this test is bogus, unproven, not FDA approved, blah, blah, blah!
I wanted my LL (used to be!) neuro to rx this test, but he wouldn't, saying the above! Well, he didn't say bogus, but everything else. I've tested positive umpteen times with Igenex, tested positive repeatedly for Anaplasma, Mycoplasma, Chlamydia Pneumonia, etc., etc. Then again, this dr teaches at Yale! I guess the kool-ade is getting to him.
It's unreal. But in the end, the truth MUST win out=----I hope!
I guess what I was trying to say is: a positive culture test may not sway those that refuse to accept Lyme---despite what seems like more than adequate proof.
Posts: 3792 | From around | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
CDC still insists on two-tier testing with ELISA first positive and then on to the Western Blot but they say the IgM is of no significance, basically.
Lots of talk about "false positives" and a sense that they do not like the lyme advocacy organizations.
I can't believe they are so very wrong about all this, even as of just a few days ago, to say these things.
see article at the discussion thread above. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Thanks everyone for your informative responses.
I DO know that you must be OFF antibiotics for FOUR WEEKS before they will run this blood test.
I also know it is pre-pay, check or credit card. Fortunately, the LLMD with whom we have made an appointment DOES have a test kit.
I am most concerned with how long it takes to get a result. The LLMDs office said it could take four weeks (which makes sense, since Bb is said to only replicate once every 28 days or so). Did anyone get results sooner? Later?
Many thanks All!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
My husband's too a bit over two weeks to culture. I don't think it is at all surprising that even after tons of abx one could still harbor this very rugged bacteria. I think most research shows persistence is the rule, not the exception.
As far as the test credibility......well, culture of any bacterial infection is usually the gold standard for dx. I guess that applies to every other infection except good old borreliosis (lyme disease).
I think we all have different reasons for trying this test. I think if my husband had been igenex positive and such, and not MS dx'd ,we most likely would not have had it done....that being said we are glad we did---and I have heard of negative results.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Mine took almost ten weeks.
Sojourner - would you be able to post the images you received? I don't have that capability. Am working on it. Would like to compare. As noted in another thread - the images of the spirochetes are not what some of expected them to look like.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
SusanK.....Yes, I can post the picture. I have been super busy with work. I'll try to do it this week.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
This is just ignorance! strange how my elisa came back presumptive positive (2001) and yet the blot showed negative and the RIBb performed at Bowen showed high saturation levels in my blood (128) as well my father, husband, mother, sister, 2 sons, an aunt and grandmother all who were ill with paralleling symptoms and most of the list have since passed on. We may have lost a few battles over the years but the war is still on, and knowledge is half the battle! Yet this is a major issue since more people are dealing with this than are aware, since no one seems to be able to get on the same page.. It appears there is more money to be made by keeping the population "ILL" than treating or even inventing a cure..Obama Care is fact backing that idea it is a profit making scheme and everyone on top now is benefiting from those on the bottom of the ladder. All I can say is read the book "LAB 257 The Disturbing Story of the Government's Secret Plum Island Germ Laboratory and It seems to me the cure still lies within the Western fence lizard (endemic to California I think) which is the only creature on the planet that can purify its blood of Borrelia burgdorferi infection. More people should be pushing to bring back Joanne Whittaker's research and push for a cure! It is such a shame that what is becoming more apparent to most in this country is that there are more people dying than there are gaining their health back! With each generation that is brought into this world; the younger and younger they are hit with serious life threatening or physically or mentally limiting illnesses as well as shorter life expectancies. It is so sad that Corporate America only seems to care about the $$ and no longer about the PEOPLE who work all their lives to their graves with little to no quality left in their lives. I dont trust many any more and the longer I live the less I trust.. so very sad.. seems the more the gov gets their hands in the mix the less and less the people get from it and the more and more it costs.. now it is costing our health and our lives.. this only reminds me of the 1940's in another country.. sick and disgusted ..
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
I've been cultured 3 times, all positive. Twice by monoclonal immunochemistry and oncee it included the Pyrg gene PCR and sequencing for more specific ID. The Pyrg gene is one commonly used as one of eight for highly specific genotyping.
I got a copy of my Pyrg gene and it identified as a B burgdorferi most closely related to a CA strain. I live in CA so it makes sense.
The CDC did a very bad assessment of the study Sapi and ALS used to validate their culture. Even though some contamination was found at the PCR/sequencing step, it was not found in the actual culture. The culture was validated by the MAB and PAB immunochemistry testing and the lack of any Bb in the controls.
The CDC blew this out of proportion and didn't even mention the contamination ocurred at a separate PCR/sequencing and not in the actual culture. They didn't even mention the conflict with the outstanding imunochemistry results, controls and even failed to locate key sequencing data on NCBI that showed the contamination MUST have ocurred outside the culture in the PCR reaction process/equipment.
I provided a fairly wordy but accurate analysis of the CDC paper that debumks their analysis.
If you want to read all the gory details, you can find my blog post here:
In any case, the CDC made a lot of noise and created the impression the culture had contamination problems - which it does not.
After the culture, I had 3 rounds of antibiotics, some pulsed, and my positive C6 antibody test went negative earlier this year. That test has its problems but if positive, it has been shown to often go negative after successful treatment. This is because the C6 is based on the Vlse surface antibody which is the Lyme spirochetes mechanism of immune evasion by continually altering the Vlse protein. When that stops, the C6 can become negative because the C6 is a peptide on the Vlse protein.
This is what they use to test dogs.
Sadly, there is better agreement on dog testing than human testing.
posted
Miyamotoi, you are mistaken to say CDC found "contamination". There was no contamination in Dr Sapi's cultures. CDC simply made a baseless accusation when the truth of the matter is that the the site of the alleged source of contamination was 200 miles from the samples that were supposedly contaminated.
Borrelia does travel on ticks on birds, but it cannot ask the bird to fly to a particular lab and drop it off.
The CDC have to do all they can to discredit this excellent test, as it proves persistence of infection in chronic Lyme patients, including those who have been treated for many years.
They even sent Ed McSweegan (fomer NIH Lyme Programme Officer) here to LymeNet to pretend to be a patient **with in-depth knowledge of microbiology** to try and convince us all that this excellent test, developed by Drs Sapi and MacDnald was not valid.
As for the C6 Elisa, that's a highly insensitive test for Lyme. The C6 Elisa is the first tier of our 2 tier test here in Britain, and as a result patients are regularly left to rot due to false negatives.
Medical science has not yet found a way to determine that a person is definitively cured of this persistent infection, although it can go into prolonged remission, like that other spirochaete, syphilis.
Elena Cook
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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Opinions seem to vary on the contamination but read for yourself and decide what happened. There is little doubt the CDC paper was extremely biased and should have never passed JCM peer review.
And I'm C6 positive so it does work for some infections. Nobody said it defines cure but rather, some studies have shown the C6 ( if positive ) does often return negative after the infection is cleared. This is the test used for dogs in the snap4Dx to diagnose and determine a cleared infection. Whether its true is anybodies guess.
The IDEXX 4Dx paper on its point of care test for Lyme in the US in dogs is here:
Yes, opinions differ - the opinions of CDC dishonest scientists like Johnson, deeply involved in the criminal denial of chronic Lyme.
Here is Dr MacDonald's statement on it:
"No Evidence for Contamination of Borrelia Blood Cultures: a Review of Facts
Alan B. MacDonald
University of New Haven, Department of Biology and Environmental Science, West Haven, Connecticut, USA
G. V. Doern, Editor
+ Author Affiliations
Next Section LETTER
Fact checking of the recent report of Johnson et al. of the CDC (1) discloses errors of fact and misrepresentations in their critique of the work of Sapi et al. (2). The CDC authors have produced three 603-base nucleotide haplotypes (partial sequences for PyrG open reading frame gene equivalents) and deposited these in GenBank under the accession numbers KF170280.1 (allegedly derived from Borrelia burgdorferi sensu lato strain B023), KF170281.1 (allegedly derived from B. burgdorferi sensu stricto strain 297), and KF170282.1 (allegedly derived from B. burgdorferi sensu lato strain Fuji P1).
Assertions by Johnson et al. (1) that living borreliae from strains B023, Fuji P1, and 297 contaminated 41 of the Sapi et al. (2) blood culture isolates are not based on facts. BLASTn DNA match searches with GenBank pyrG sequences using KF170281.1 (B. burgdorferi) and KF170282.1 (Borrelia garinii) invalidate the conclusions of Johnson et al. (1).
Further CDC misrepresentations to Journal of Clinical Microbiology readers include wording that garinii-type Borrelia human infections vectored by ticks in the Western Hemisphere have never been described. These statements are overturned by the published literature.
Among the overlooked references to support B. garinii in the Western Hemisphere are two cases of Borrelia lymphocytoma in patients from Mexico (3). Borrelia lymphocytoma is never due to U.S. strains of burgdorferi-type Borrelia but is linked to European epidermotropic Borrelia afzelii and Borrelia garinii strains and European Borrelia burgdorferi strains.
Reports from Brazil implicate Borrelia garinii as an etiologic agent of Brazilian Lyme borreliosis (4, 5).
A case report from Wisconsin (6) is also overlooked.
Johnson et al. (1) allege specifically that there is DNA evidence of contamination of human blood isolates of borreliae (patient no. 1 to 20, 28 to 47, and 50 in Table 1 of reference 1).
BLASTn interrogations using CDC interrogators KF170280.1, KF170281.1, and KF170282.1 show that only one of the Sapi et al. (2) human blood isolates (accession numbers beginning with “JX86”) matches a CDC interrogator 100% (i.e., 603/603 bases), and that blood isolate is Borrelia afzelii (accession number JX867398.1), which matches CDC interrogator KF170280.1. There is no DNA support for contamination of any other Sapi et al. (2) blood culture isolates based on supercomputer BLASTn searches with the CDC interrogators KF170281.1 and KF170282.1.
The reader is invited to engage the NCBI BLASTn supercomputer and to audit these results. To do so, on the BLAST home page (http://blast.ncbi.nlm.nih.gov/Blast.cgi), choose “nucleotide blast” as the program to run. Then, copy the CDC interrogators (e.g., “KF170281.1”) one at a time into the search box, scroll to the bottom of the window, and click the “BLAST” button at the bottom of the screen. All DNA sequences with partial or complete identities will be presented in rank order. Scroll down past the color bars to find these detailed listings. Inspect the list of numbers in the far-right column (headed “Accession”).
Sequences for Sapi et al. (2) blood isolates have accession numbers beginning with “JX86.” DNA sequences in the list with accession numbers that do not begin with “JX86” will not be from Sapi et al. (2). The simplicity of this audit exercise is remarkable.
Johnson et al. (1) failed to comprehend that Sapi et al. utilized, in addition to B. garinii-type Fuji P1, five other B. garinii type strain pyrG sequences in their quality control procedures, specifically, DNA sequences AB555778.1, JF331269.1, JF331231.1, JF331248.1, and JF331265.1. In sum, what Johnson et al. (1) and the CDC have called into question is not the analytical methods of Sapi et al., which are sound. Rather, it is clear with fact checking that opportunities for correction of errors in the Johnson et al. (1) paper were missed.
Assertions of contamination of patient specimens by Advanced Laboratory Services are not substantiated by BLASTn supercomputer interrogations with CDC DNA sequences as described above. Previous SectionNext Section FOOTNOTES
For the author reply, see doi:10.1128/JCM.00252-14.
Previous Section
REFERENCES
1.↵ Johnson BJB, Pilgard MA, Russell TM . 2014. Assessment of new culture method to detect Borrelia species in serum of Lyme disease patients. J. Clin. Microbiol. 52:721–724. doi:10.1128/JCM.01674-13. FREE Full Text 2.↵ Sapi E, Pabbati N, Datar A, Davies EM, Ratelle A, Kuo BA . 2013. Improved culture conditions for the growth and detection of Borrelia from human serum. Int. J. Med. Sci. 10:362–376. doi:10.7150/ijms.5698. CrossRefMedlineGoogle Scholar 3.↵ Gordillo-Pérez G, Torres J, Solórzano-Santos F, de Martino S, Lipsker D, Velázquez E, Ramon G, Onofre M, Jaulhac B . 2007. Borrelia burgdorferi infection and cutaneous Lyme disease, Mexico. Emerg. Infect. Dis. 13:1556–1558. doi:10.3201/eid1310.060630. CrossRefMedlineGoogle Scholar 4.↵ Sulene P, Yoshinari NH, Médicis da Silveira A, Ferreira Bento R, Bonoldi V . 2002. Serological reactivity to Borrelia burgdorferi, Borrelia afzellii, and Borrelia garinii antigens in patients afflicted by peripheral facial paralysis in Brazil. Otol. Neurotol. 23:S33. CrossRefGoogle Scholar 5.↵ Talhari S, Nunes de Souza Santos M, Talhari C, Carlos de Lima Ferreira L, Moreira Silva R Jr, Zelger B, Massone C, Ribeiro-Rodrigues R . 2010. Borrelia burgdorferi “sensu lato” in Brazil: occurrence confirmed by immunohistochemistry and focus floating microscopy. Acta Trop. 115:200–204. doi:10.1016/j.actatropica.2010.02.017. CrossRefMedlineGoogle Scholar 6.↵ Finkel MF, Johnson RC . 1990. Borrelia lymphocytoma: a possible North American case. Wis. Med. J. 1989:683–686. Google Scholar
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