TNT
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posted
I have not had the culture. It's pretty pricey. I think $750.00. You have to be off ABX for at least 6 weeks to have it done. I told my doc that I don't need the culture because I can see them quite well under a microscope.
I also told him that if he has to do it to protect his own rear end, I guess I will have to. But, if I have to do it, I WILL be sending along a usb drive with my video footage of the ketes.
Lymedin, if you do a search, you will find that the culture test you speak of has been discussed here at length in the past. I remember reading some good discussion about the controversy and bad rap from the CDC.
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Lymedin2010
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I am interested in hearing from those who had it done & what the experience & outcome was like.
There is a caption on the Advanced Labs site & I wonder what the difficulty was in obtaining approval?
"This test was developed and its performance characteristics determined by Advanced Laboratory Services. It has not been cleared or approved by the U.S. Food and Drug Administration."
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Lymedin2010
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"A new chapter in the Lyme disease controversy opened in September 2011 when Advanced Laboratory Services, Inc, announced the commercial availability of a new culture test for Borrelia burgdorferi. Some Lyme patient advocacy groups and physicians began encouraging patients to have the $595 test, but others are concerned about the early commercialization of the still-unvalidated test. This concern may result in changes to how the US Food and Drug Administration (FDA) regulates so-called "homebrew" or laboratory-developed tests (LDTs).
Physicians on all sides of the Lyme disease arena agree that a reliable culture test for active Borrelia infection would be a breakthrough. They differ on whether it is a good idea to market a blood test to consumers before it has been validated, peer-reviewed, published, reviewed by the FDA, or widely vetted by infectious disease experts with experience in Borrelia infections.
Joseph J. Burrascano Jr, MD, senior vice president of medical affairs and medical director for Advanced Research Corporation, voiced the complaint of many in the field that the 2-tier Lyme disease test approved and used by Centers for Disease Control and Prevention (CDC) relies on a serologic assay that can only indicate possible past exposure.
"What is very much needed is a direct test that can indicate whether living Borrelia are present in a patient," Dr. Burrascano said.
No Published Data
Soon after Advanced Laboratory Services' initial public announcements about the new culture test, emails and public statements attributed to Dr. Burrascano began appearing on Lyme-related Internet sites, including comments that the culture test was approximately 94% sensitive and 100% specific.
Dr. Burrascano told Medscape Medical News that the validity of the culture test was established using blood samples provided by physicians and that the identity of Borrelia was confirmed by its ability to grow in Borrelia-specific media, by its characteristic appearance on darkfield microscopy, by reacting to published Borrelia-specific polyclonal and monoclonal immunostains, by DNA polymerase chain reaction (PCR) at 2 different loci, and by direct DNA sequencing. These data are so far unpublished.
According to Dr. Burrascano, "All clinical samples turned out to be B burgdorferi sensu stricto, which would be expected, as the clinical samples all came from patients who met the strict CDC surveillance case definition as having Lyme.... In addition, when a large number of normal controls were tested (well people), none of them had any positive cultures, meaning that there were no false-positives."
Dr. Burrascano said that a paper reporting the data has been submitted for publication and that "2 university-based research labs are each separately well on their way in validating the results of Advanced Labs.""
Posts: 2087 | From NY | Registered: Oct 2011
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Lymedin2010
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"The cost for the Advanced Laboratory Services "basic culture with polyclonal staining" is listed as $595.00 on the company's Web site. "PCR with DNA sequencing, monoclonal immunostaining, and extended culture are options that are provided at an additional cost.... Because Advanced Laboratory Services does not participate in insurance plans, the sample must be sent with credit card information or check." Thousands of patients seeking Lyme culture tests at $595.00 per test would represent millions of dollars per year in sales for the company."
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Dr. J drew my son's blood 3 summers ago and sent it to Advanced Labs. After 12 weeks, spirochetes were found in his blood sample. They sent us a color copy photograph of 2 of the little buggers. It was actually quite shocking to see them after 3 years of oral abx.
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Lymedin2010
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Thanks.
Have things changed & any course of action changed as a result of the tests?
I have seen the spirochetes grow in my own blood samples (since I do my own blood microscopy) despite very aggressive abx therapy. Many of us are finding the same thing though, as we are seeing spirochetes despite oral abx.
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Have things changed & any course of action changed as a result of the tests?
I have seen the spirochetes grow in my own blood samples (since I do my own blood microscopy) despite very aggressive abx therapy. Many of us are finding the same thing though, as we are seeing spirochetes despite oral abx.
He sees the other Dr. J's nurse practitioner now and we started pulsing doxy and other abx a few months ago. He has herxed several times through pulsing, which never happened with continuous abx. Unfortunately, there have only been very slight improvements. He's autistic and was born with lyme et al. He's also nearing puberty, so we're hopeful that his immune system will change for the better then. I don't think we'll do another expensive culture test unless we see a dramatic change in his behavior or cognition.
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Here is a good video of Dr. B talking about the culture test with Dr. C. They start talking about the test at 10:50 in the video.
posted
I had the ALS culture 3 times. All positive. Once before beginning long term antibiotics, again about 4 months into the antibiotics (on them) and lastly after completing about 9 months of antibiotics.
On the first 2 times, I ordered the polyclonal antibody verification just in case I had a different genospecies.
The 2 polyclonal positives showed the Borrelia of one genospecies grew from my culture. Even though B. burgdorferi is the most common in the US, I have travelled to Europe and B. miyamotoi, B. bissettii, B. andersonii and B.americanii have all been found in human disease in the US albeit less common than Bb. The polyclonal would certainly catch Bb, B garinii or B afzelii for Europe but most likley would catch most if it wasn't Bb.
B. andersonii and B.americanii were found in Southern Lyme patients by Kerry Clark in his study.
Lyme Borreliosis in Human Patients in Florida and Georgia, USA
B. miyamotoi has been found in humans and causing a Lyme like illness throughout the world. Its now been found just about everywhere Lyme is found in the US from the Northeast to California.
So the positive polyclonal showed it was Borreliosis but was not definitive on B. burgdorferi but it was most likley just statistically.
The 3rd and post antibiotic time I ordered the polyclonal and pyrG gene sequencing options which is no longer available.
My doctor was able to get a copy of my pyrG gene partial sequence from ALS. I was able to take the pyrG gene FASTA sequence and do a search on NCBI Nucleotide BLAST for my strain.
The beauty behind the pyrG CTP synthase gene sequencing and getting copy of the FASTA sequence of the nucleotides was I was able to find the genospecies and closest strain in the NCBI database.
I checked the sequence carefully and cut out from one end after the garbage ended to just before the garbage started at the end. I enterd the FASTA sequence into BLAST and up came a B. burgdorferi genospecies with a strain that began with CAxxx.
Strains found in California are labelled as CAxxx where the first 2 letters indicate the source location. I found a California strain was the closest to the FASTA I was given - good news since I would expecpect that. A good check.
Its been a while so I forgot the actual strain ID but being CA was a good check the culture and subsequent sequence was working. I recal having 2 nucleotides different plus mine had 2 added. The 2 added might have been an error plus the sequencing error rate isn't great but eliminating my 2 extras, just made it closer to the California strain.
Why did I tell you all of that? Because the fact I had 3 positives was good confirmations since its 3/3 rather than 1/3 or 2/3 plus my actual pyrG sequence appeared to most closely match strains in NCBI form California. That would be much better than finding a strain from the Northeast.
The 3/3 plus strain geographic consistency gave me a good feeling the culture was working.
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