posted
Dear all I have just posted the following on Medscape Comments section, under the (second) disgraceful article by Janis Kelly attacking the new culture test which has been detecting Borrelia in so many chronic Lyme patients.
To those who don't know the background - Dr Sapi and Dr Macdonald collaborated to develop this excellent test, currently available thru Advanced Laboratory in Penn.
CDC then attacked it in an extremely suspect paper by Dr Barbara Johnson in Aug 2013 (see below)
Today (18 April 2014) CDC have now put out an official warning in their bulletin MMWR, alleging the excellent results reported by Sapi et al were due to contamination and recommending the test not be used.
This is a slap in the face to the entire chronic Lyme patient community in the US, and will have knock-on effects internationally, dashing people's hopes.
Please add your own comment if you are a healthcare professional;
if not please encourage your LLMD or any other healthcare professional you know who understands the issues to add their comments too at the Medscape URL below. (Medscape is the largest medical portal in the world)
I and other have previously had our accounts interfered with , our posts sabotaged or remove by Denialists (most likely by the former NIH Lyme Programme Officer Dr Ed McSweegan,
who actually pretended to be a patient called "Tom Eames" for over a year and a half, just in order to discredit this test.
I am happy to report that Medscape staff restored my and others' messages. It seems that doctors at this prestigious forum do not sympathise with the Denialists' childish and criminal tactics to suppress the facts re this test. Elena
If you are able to circulate my response in other internet arenas, and any rebuttals that our doctors/researchers should now provide, that would be helpful too.Thanks.
Elena Cook| Nurse/Advanced Practice Nurse just now I think it is time for medical and other health professionals to know the facts regarding this excellent and much-maligned Borrelia culture test.
The warning published by Dr Barbara Johnson, along with various EIS officers at CDC in their bulletin MMWR is based on Dr Barbara Johnson's own paper
condemning the test in the Journal of Clinical Microbiology in August 2013. Dr. Johnson's paper, on close examination, raises great concerns of its own.
One of the main tenets of Johnson's argument was that the results published by Dr Sapi must have been due to contamination of her cultures by lab control strains.
CDC's Dr Ben Beard (co-author of the MMWR warning) was unaware at the time that the two sets of material were 200 miles away from each other , when CDC made this allegation. Yet he refused to have CDC retract it after being informed.
Dr Johnson alleged that only contamination could explain the large number of American patients' samples which grew Borrelia garinii on culture,
citing the fact that CDC has always maintained that the only species of Lyme Borrelia infecting US patients in Borrelia burgdorferi sensu stricto. (B. garinii is well-known in Europe and Asia).
This ignores not only the the fact that Americans travel abroad to tick-ridden areas, but more significantly, the following:
It has now been clearly established in the peer-reviewed literature that the US is home to other human-pathogenic Borrelia causing a clinical picture identical to Lyme,
and that some of these (eg B. miyamotoi) are not even part of the Bb sensu lato group, never mind restricted to one strain within it (Bb sensu stricto).
New evidence suggests B. garinii, which is highly associated with neurological disease and with birds as tick hosts, may well be in North America.
In addition Borrelia are notorious for the number of DNA recombinational events far in excess of the mutation rate. This could in theory result in a pyrG sequence which matched a different strain, such as garinii.
What is not widely known is that Dr Johnson HERSELF, in a patent published just weeks before her 2013 paper condemning the culture test as invalid because it found many garinii-positive US patients, wrote the following:
"B. garinii has been found in pelagic bird colonies off the coast of North America, so there may be potential for infection by this agent in North America." (See Patent WO 2013110026 A1
Having written that in her own patent (published July 2013), it was surely the height of hypocrisy to then condemn Dr Sapi et al for reporting having cultures B. garinii from US patients' blood.
Spanish researcher Dr Elena Gomez-Diaz of Spain studied Borrelia garinii strains across a huge geographical area, from a very wide range of ticks, including seabird ticks (well-known vector of B. garinii)
She used multi-locus sequence typing which included a portion of DNA was from the same part of the pyrG gene used by Dr Sapi used in her study,
and which CDC have indicated render Dr sapi's published results invalid, by stating that that the degree of identity between that portion of DNA sequence in the patients' sera and in the control strains was implausible, unless contamination had occurred.
But in fact Dr Gomez-Diaz found large numbers of B. garinii strains which had a 99% DNA match to each other at that locus - yet they were all distinct strains, some from seabird ticks, some from Ixodes ricinus (European sheep tick),
and from locations as far apart as France and the far eastern part of Russia which is of course not so far away from Alaska and the west coast of US.)
To add insult to injury, in Dr Johnson's 2013 paper, she published data relating to portions of pyrG which she stated she had sequences and deposited in Genbank.
However a search for the accession numbers she gave by Dr Alan Macdonald, who was involved in developing the culture test, revealed that there were no such sequences present in Genbank at the time of publication.
Therefore it is not possible that a comprehensive peer-review could have occurred without such key data so central to the accusation of contamination.
After Dr Macdonald flagged up the absent DNA sequences in an open letter to CDC's Dr Ben Beard, the sequences finally appeared in Genbank - though somewhat different to what had been published in the paper.
I am sorry to say that CDC and their Epidemic Intelligence Service (EIS) officers have seriously lost the plot.
By condemning a sound culture test, they have slammed the door of hope shut on thousands of patients suffering chronic Lyme disease.
CDC themselves recently admitted their published incidence rate for Lyme Disease does not reflect the number of cases diagnosed in the US, and that their figure was off by a factor of ten.
One would hope they would reflect on the damage done by this gross under-estimation of an epidemic that is spiralling out of control.
Instead, they prefer to shoot the messenger, trying to discredit an excellent test which could aid diagnosis and see patients treated.
A recent FOIA request revealed CDC and Dr Allen Steere collaborating to bury data which showed the current CDC-recommended testing protocol,
I would like to add that I have no connection whatsoever with the Advanced Labortory company and do not benefit financially in any way from the culture test. My interest stems from my advocacy for Lyme Disease patients.
This is a truly cowardly and baseless attack on a test which could give hope to so many people.
I'd like to add that shortly before this CDC warning was published, my entire account including all my previous posts mysteriously disappeared from another Lyme forum I belong to. The posts included material relating to Dr Elena Gomez-Diaz' findings and details of relevant BLAST (genetic tool) results which I had re-posted from Dr Macdonald's rebuttal to CDC last year.
I think that CDC , Dr McSweegan, and other Denialists are terrified of data such as this genetic information being out in the public domain where it can be picked up by doctors using Google to try and get to the bottom of the controversy over the culture test.
If they had a scientific leg to stand on, would CDC and the other Denialists have resorted to methods such as getting McSweegan to impersonate a patient on various Lyme forums (including this one), in order to announce (after keeping the charade going for a year and a half) that he was very "sorry" to say that the culture test was not valid after all.
Shame on the lot of them.
Elena
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poppy
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I don't think lyme docs should be publicly responding to this kind of thing. Sets them up for retaliation. Instead, the lab and researchers should be responding, as I think they will in time, when the validation studies are done. Dr. M has already written a letter.
Then,too, lyme organizations and activists could respond, focusing on the failures of the two tier test. The CDC needs to get its own house in order before they criticize others for the very same problems they definitely do have in testing reliability.
Not very many patients, including me, are going to have the background to take the CDC papers apart on the criticism of the culture test. This stuff is totally over my head. Lacking that background, our best response as patients is to point out the deficiencies of the CDC two tier test instead.
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poppy
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And I can't figure out how comments are submitted anyway. When I go to the site, comments can be read, but no place to submit them. Help?
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Razzle
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Once again, my security settings prevent me from viewing or posting comments... I really wish these websites would stop relying on insecure methods for this stuff.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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Rumigirl
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quote:Originally posted by poppy: I don't think lyme docs should be publicly responding to this kind of thing. Sets them up for retaliation. Instead, the lab and researchers should be responding, as I think they will in time, when the validation studies are done. Dr. M has already written a letter.
Then,too, lyme organizations and activists could respond, focusing on the failures of the two tier test. The CDC needs to get its own house in order before they criticize others for the very same problems they definitely do have in testing reliability.
Not very many patients, including me, are going to have the background to take the CDC papers apart on the criticism of the culture test. This stuff is totally over my head. Lacking that background, our best response as patients is to point out the deficiencies of the CDC two tier test instead.
I agree, poppy , that our docs should not be answering, as they may get their heads chopped off (their licenses).
Sick, sick, sick on the part of the CDC. No suprise there, however.
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posted
Doctors need to be careful. This is an FDA warning and it opens the door to another path to putting them before license boards for violating the FDA warning. Doctors are best staying out of it as it could cause them trouble they don't need.
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t9im
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Hi Elena:
IMO this was the CDC's effort to discredit the test so they can continue their efforts to have the medical community adhere to the two tier testing standard. Barbara Johnson's fingers are all over this.
This is all they need out there for the next IDSA conference.
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poppy
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This is not an FDA warning, as far as I can see. It is Barbara Johnson getting more mileage out of her previous article on the same subject. Misusing the clout of the CDC.
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poppy
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The lymedisease.org people have now responded to this. Could someone please post this as a link or in its entirety on medscape as a comment? I don't seem to be able to post comments. Here is the link:
posted
Just a concern. The letter is from both the CDC and FDA. The MMWR letter is co-authored by Sally Hojvat, PhD, who is the director of the FDA's Division of Microbiology Devices. They are the group that regulates testing. So it doesn't seem to be a stretch that a medical licensing board could use it against a doctor given its a joint warning. Doctor's don't need that kind of threat.
I believe ALS needs to respond with additional data or the other ongoing studies given a real battle seems to be escalating. If the FDA director of the Division of Microbiology Devices is involved, its only a matter of time till a full FDA warning arrives as happened with 23andMe. Hopefully ALS will get proactive.
23andMe failed to respond to this kind letter and then got shut down for medical results. This back and forth is ongoing but it takes a subscription to read it but it doesn't look good.
posted
Poppy, it's shameful that our good doctors have to "keep their heads down" and go incognito. I'm not suggesting that any doctor in this position risk his license by writing in to Medscape.
But we also have a large number of doctors and other health professionals who have very publicly and openly stated their views and are members of ILADS. Many of them have written papers and spoken publicly on issues relevant to this. We need as many of them as possible to comment on Medscape, as CDC is manoevring to try and keep any dissenting opinions out of the medical journals.
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poppy
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Thanks elara for clarifying about FDA. It is my understanding that papers supporting this culture test are in line for publication, so lets hope that tones down the CDC rhetoric. Not that they ever let facts get in the way of slander and acts that hurt patients and cause failures in public health. I would so like Barbara Johnson and that gang of thieves in jail.
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poppy
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New info just posted on the lab site. Read it. Good stuff.
posted
It appears they have reposted the original Sapi paper, included a letter by Philip M. Tierno, Jr., PhD that doesn't say to much and a statement saying there will be a paper coming in May in the same journal discrediting the Johnson assessment. Hopefully that paper will be solid and clear things up. Its a shame we have to wait till May. 23andMe didn't respond which got them in trouble..
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poppy
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One has now been published in that journal. Apparently at least one more in the works. Plus validation studies underway.
I am feeling more comfortable about the accuracy of the lab's results and think that anyone but a lynch mob would accept them after the validation study results come in. It is unfortunate that it has taken so long, but I wonder how many other labs would be attacked in this way.
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Elara, I disagree that Prof Tierno's letter "Doesn't say too much". I think he has said what needed to be said, and throwing his weight behind our cause is important.
Here's his comment:
"I have read with great disappointment several reports by the CDC, Fort Collins Group, spear- headed by Barbara Johnson, criticizing Advanced Laboratory’s culture technique results reported by Dr. Eva Sapi last year, as being “probably contaminated”. Worse than that are the numerous lay reporters and professional medical news media all jumping on this bandwagon without just cause . On top of that, these journalists erroneously reported that contamination of cultures did occur when theCDC,in fact, did not say or prove that.
None of these reporters have had the decency to investigate before casting stones. I have personally become involved reviewing the great accomplishment of Advanced Laboratory’s development of a culture technique reported to have a high sensitivity (94%)which is more than double the CDCs supported assay techniques sensitivities.
In light of the high reported sensitivity of the culture assay one would think that the CDC should be involved in aiding and supplementing such procedures helping to perfect same (if they feel it lacking) for the public good instead of discarding it outright . That does not seem to ring right to me. Interestingly the CDC did not criticize the culture technique itsel f (which by the way is excellent in my review) instead they assert that they “cannot rule out” contamination of the reported results.
Yet interestingly , if contamination was so rampant not one of the controls was so contaminated and yet they ignore this. And in two reports I saw that will be soon published, a super computer Blast genome of GenBank analysis disputes Johnson’s contamination speculation.
I have firsthand knowledge of Advanced Labs facilities, their personnel, and their analytic techniques, which in my professional opinion are excellent.
Philip M. Tierno, Jr., PhD Frm Director of Clinical Microbiology and Immunology New York University School of Medicine"
Elena Cook
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posted
I'm re-posting here some info that Dr Macdonald posted last year on the Net, as it's very important:
CDC Critique of Sapi et al Blood Culture for Borrelia in Human Blood:Many Mistakes by the CDC critique methods and False Conclusions CDC Critique of Sapi et al Blood Culture for Borrelia in Human Blood:Many Mistakes by the CDC critique methods and False Conclusions: _________________________________________________________________________ CDC Analysis of the DNA sequencing Data for the Advanced Labs Blood culture isolates: by Dr. Barbara Johnson et al. ________________________________________________________________________ An Official CDC critique and an Official CDC accusation of alleged Flawed Advanced Laboratory techniques resulting in Only 3 genovars instead of 60 + Genovars of Borrelia as reported by Sapi __________________________________________________________________________ The CDC Analysis is flawed for the reasons posted below and the CDC manuscript must be withdrawm _________________________________________________________________________
The Reader of the CDC manuscript will infer that The CDC had in their possession aliquots of each of the isolates from Advanced Labs
If this is NOT the case, the CDC may be required to issue a Retraction of their manuscript to clarify this point for the reader and to address the BLASTn data which follows for a single isolate.
Advanced Laboratories and the CDC agreed had 21 nucleotide mismatches with B31 were present in the exemplary Isolate. [Isolate JX867376}
CDC analysis of isolate JX86 7376 detected 21 base mismatches with respect to B31 and the Sapi Paper also reported 21 base mismatches with respect to B31 [97% identity with B31] I did a BLASTn search on isolate JX867376 against all borrelia.
A 100% match was obtained with JX867376 itself as deposited in GenbBank.This is expected and this 100% match indicates that the 603 bases were correctly entered into the NCBI BLASTn Search Engine. ------------------- B31 borrelia complete DNA sequence produced a result with 21 mismatches against Sapi deposit JX867376 for a congruence percentage of 97%
It is interesting that the BLASTn search also revealed 97% matches for the additional Borrelia on Deposit in GenGank:
N40, CA382 ZS7 and multiple numbered haplotypes of Borrelia spp. A 96% match was noted for multiple genotypes of B. garinii and B. Bavariensis.
So if the truth be told, based on a BLASTn search of all Borrelia in GenBank, it is very very misleading to state that isolate JX867376 was UNIQUE for B31 as is posted at position 49 in the CDC Table.....AND .....
and to omit any mention of the following borrelia genotypes which also yielded 97% matches with JX867376 according to BLASTn search. ST12 N40 ST8 CA382 ST4 ST51 ST56 St1 ZS7 Each and every one of the above genotypes should have been posted at postion 49 in the CDC table. To post only B31 is very misleading to the reader who does not use the BLASTn tool for sequence analysis and borrelia genotyping. ______________________________________________ Correction to the CDC Table of Results for (97%) [21 base mismatches against reference strain borrelia burgdorferi B31] against Advanced Labs Isolate JX867376.
" This Advanced labs isolate may indicate ANY of the following Borrelia species: B31, N40,ZS7,ST! ST4, ST8ST12,,ST51,ST56, CA382, _______________________________________ _______________________________________
Mismatches of Bases by BLASTn analysis should now be initiated for Each and Every Advanced Lab nucleotide sequences and the original manuscript should be withdrawn and re-written to accommodate BLASTn search data for each of the Advanced Lab PyrG nucleotide sequences.
I look forward to CDCreconciliation of BLASTn data with the observed Advanced Lab dep[osited nucleotide Sequences
with the hope that the issue of Contamination of Patient Recovered Borrelia from blood cultures may be viewed in the full context of BLASTn search Data to embrace all possible borrelia species with closely matching nucleotide sequences.
The maximum number of polymorphic sites in CDC analysis of the Sapi Data was 21. CDC speciated only 3 strains of borrelia in Their analysis :
B31 burgdorferi [N=22], B023 afelii [N=2}, and Fuji P1 garinii [ n=27] These assignments conflict with the Sapi paper as follows:
In the Sapi manuscript Table 3 : Sapi et al reported 5 isolates of Garinii - [ no identical garinii genotypes noted by Sapi }
1 isolate of afzelii Pko [consistent with European type afzelii] 3 kurtenbachii [ all genotypically distinct] 1 americanum and 6 burgdorferi [B31=1] , [ZS7=1} , [ N40=1], { ST1 =1], { ST11 =1}, { St8=1}.
For the remaining: "JX86***** series isolates I will consult the GenBank accessions as I have for isolate JX867376.... and perform my own Clustal analysis. of nucleotide Base alignments
CDC group registered the following genovars [ your results in parentheses] among the JX86**** series: 7424 51 polymorphic sites [Called Afzelii B023 by CDC group] 7398 49 polymorphic sites [called Afzelii B023 by CDC group] 7394 43 polymorphic sites { Not classified by CDC group} 7417 42 polymorphic sites [Called Garinii Fuji P1 by CDC group} 7380 42 polymorphic sites {called Garinii Fuji P1 by CDC group} 7378 42 polymorphic sites { Called Garinii Fuji P1 by CDC group} 7379 42 polymorphic sites Called Garinii Fuji P1 by CDC group}
Twenty one isolates with 41 polymorphic sites EACH [ isolates not collated here] 7393 39 polymorphic sites [Called garinii Fuji P1 by CDC group} 7376 21 polymorphic sites [[See above - called B31 burgdorferi by CDC group}} 7419 2 polymorphic sites [ Called burgdorferi B31 by CDC group}
CDC also indicate that CDCS equence analysis yielded 27 Identical isolates of Garinii 2 i dentical isolates of Afzelii.
22 isolates of B31 { with only 2 cases #48 and 49 called B31 burgdorferi with "mismatched" bases : #48 n=1 miusmatch and #49 with 21 mismatches] So instead of 60+ unique Borrelia genovars, the CDC reduced the Sapi/Advanced Labs results to just 3 genovars ----------------------------------------------------- I insist the the genotyping of the Advanced Labs GenBank deposits speaks for heterogeneity of genovars, and reinforces the concept that So called European type borrelia may very well be now recognized as vectored by USA Ixodid ticks.
Mexico, Central America and Brazil are geographies in which GARINII has been proven to be vectored by ticks.
To make matters more complex, the Amblyomma family of ticks (Amblyomma cajenesse) are competent vectors for Garinii infections in the Western Hemisphere.
We need not look to Sea bird migrations to explain USA cases of Ixodid scapulairs and Amblyomma spp. vectored human infections.
The uniqueness of the Sapi report of Advanced Labs Human Blood culture Borrelia strains is therefore CORRECT.
No Laboratory Contamination of patient material with any living borrelia ever occurred. European Strains of borrelia were recovered from the blood of USA patients in the Advanced Labs study of Borrelia blood cultures.
Respectfully submitted, Alan B. MacDonald MD FCAP FASCP August 16,2013
posted
The CDC continues its shameless course.They have to be stopped.Go to "activim" and sign the Tuttle petition, if you havent done so before.Friends and Family can sign too
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poppy
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The CDC has a history of trashing more sensitive tests for lyme. This has been going on for more than a decade.
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posted
Also,all the patient samples were 2 tiered sero positve tested,which is a very poor test to find garinii and afzelii.
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TX Lyme Mom
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quote:Originally posted by Lymefor15years: This is important to me because taking antibiotics based on my positive culture worries me. Doesn't anyone worry like me? Its a big deal taking antibiotics for years. Its trashing my gut flora, has weird side effects and the culture is my only evidence its needed.
Some doctors take advantage of other methods of testing to monitor progress for patients under treatment in order to know when to discontinue treatment. You might pick up some clues from this summary about Lyme testing: http://www.betterhealthguy.com/lyme/testing
Dr. S has a different take on it. He monitors progress via C3a levels (which is not mentioned in the article above).
Dr. S believes that Borrelia's neurotoxins account for lingering symptoms of chronic Lyme disease and that treating with sequestrants such as Questran to absorb and eliminate these neurotoxins from the GI tract is what will eliminate chronic Lyme symptoms.
Knowing when to discontinue treatment is really difficult, according to several LLMDs whom I've heard speak. Burrascano's Diagnostic Hints and Treatment Guidelines offers some valuable clues in this regard also: http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf
Let's not get too far off-topic here though, but I did sense your legitimate concerns regarding overtreatment. If you want to continue this discussion, then it might be better to start a new separate topic for it so as not to hi-jack this important topic.
poppy
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I am satisfied that the results of this lab are accurate. You have to read the stuff yourself and decide. Personally, I would go more on symptoms than any test, since people can apparently be infected and have no symptoms. And no symptoms usually means no treatment. However, I have heard of an infected asymptomatic spouse being treated to avoid passing it back to a spouse that was previously symptomatic and treated.
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TX Lyme Mom
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quote:Originally posted by Lymefor15years:
quote:Let's not get too far off-topic here though, but I did sense your legitimate concerns regarding overtreatment. If you want to continue this discussion, then it might be better to start a new separate topic for it so as not to hi-jack this important topic.
Now I'm even more confused. Others have been writing things supporting why the culture is ok and doctors should defend it. Some facts don't seem right and my health is at stake. Are you giving medical advice to ignore common sense and just listen to us? Can you even understand my concern.
Is this forum a one sided only forum where someone asking about a an important concern as to why those things said in this thread are not convincing is now called "hi-jacking". Is only one view allowed? The 2 issues, whether the culture is ok and taking antibiotics due to a positive are related.
No, absolutely not. It's just that I've been a member her for over a decade and it's been customary to try to keep topics on point and to start a separate new topic for special concerns. That's all I was suggesting because folks used to get really upset whenever someone diverted someone else's topic away from its central message.
I was just trying to be polite to the person who initiated this original topic, that's all, but I didn't mean to offend you in the process. My goal is to insure that you find answers to your very real personal health concerns, but without deviating from the important nature of this original topic. I hope that clarifies my intent.
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posted
"...It makes sense that a few people might show up with garinii but not half. Either there is a giant conspiracy among many researchers testing ticks or something is not right..."
Actually, it's both: there is a conspiracy to not diagnose, and therefore NOT treat. And many things are not right because of this seismic fault -- Darwinian fault -- where the CDC lies at the epicenter. In particular, CDC employee Barbara Johnson and her patents.
This article may do a better job breaking down some of the complex issues that are introduced earlier. In fact, it's a good article in that it also summarizes related issues.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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posted
Welcome, brand new member "Lymefor15years". I see you have just joined us on 23 April 2014(yesterday). I am sure you will find plenty of excellent information and advice here.
I agree with TxLymeMom that we should not veer off the topic. Very often people ask questions here about length of treatment, abx side effects etc..
It is best to open a new thread for that, and then you will get answered by people who are specifically interested in that topic, rather than those who want to discuss the Culture test, and the disgraceful CDC attack on it.
Please remember though, that the only person qualified to give you advice is your own (Lyme-literate) doctor. (You could also ask him or her their view on the culture test).
Now, re your questions on B. garinii. Did you notice the link I posted to CDC Godmother Dr. Barbara Johnson's patent, and the quote from it:
"B. garinii has been found in pelagic bird colonies off the coast of North America, so there may be potential for infection by this agent in North America." (See Patent WO 2013110026 A1
So you see, the very person who organised the attack on the culture test, suggests that she HERSELF believes garinii is present in North America (suggests it quietly, in a patent which she obviously did not think the Lyme community would read).
That patent was published just weeks before her attack on Dr Sapi's test on the grounds that "garinii could not be in the US".
Now you have presumably read about findings in Egg and St Lazarus islands, about garinii in Mexico and in Brasil. Mexico in particular throws up the question: why would birds carrying borrelia garinii, in ticks or in their bodies, stop at the US-Mexico border and refuse to go any further?
As as you appear to know a great deal about garinii, you will obviously be aware of its well-known association not just with NEURO Lyme but also with birds and especially seabirds.
Humair in 2001 demonstrated that seabirds were transferring garinii trans-hemispherically.
Garinii has been detected in Asia, in western, eastern and central Europe, in the UK, in Scandinavia, South America, Canada, Africa, the Arctic circle - virtually the whole world.
I believe it has even been spotted recently in Antarctica. (I'll check on that if you wish).
So really, if it is in virtually every other location in the world, the question is not so much "How could it be in the US", but:
"How could it NOT be in the US"?
Another point to bear in mind is that this identification is only based on one portion of one gene.
It's not impossible that what was found was a different species altogether (perhaps a hitherto unknown one, like miyamotoi), which just happens to have a garinii-like sequence for those particular 603 bp's of that particular gene.
In fact, if you look at the Blast output, as I recall, the garinii strains were very very close genetically to strains of Borrelia bavariensis.
Are you familiar with using Blast, "Lymefor15years"? Do you have a scientific background?
posted
Oh, and while you are chewing this over, "Lymefor 15years", please take time to read the recent paper by Comstedt et al:
"B. garinii spirochetes with identical flagellin B (flaB) genes were found in ticks from both the southern hemisphere (Campbell Island, New Zealand, and Crozet Islands) and the northern hemisphere (Egg and St. Lazaria Islands, USA) suggesting that seabirds can act as long-distance carriers of the infection (Fig. 1; 10). "
Note: IDENTICAL genes - DIFFERENT hemispheres
And further:
"As the ticks only feed for a few days and the birds’ migration causes them to spend longer periods of time above or in open water, the spirochetes are probably transported as a latent infection in the birds, rather than by infected ticks.
A phylogenetic analysis of I. uriae from both the southern and the northern hemisphere also suggests separate reproduction cycles of the ticks (50). It has been shown that a latent B. burgdorferi (s.s.) infection can be reactivated when the birds are subjected to stress as in the case of seasonal migration (51).
This could further aid in the global dispersal of B. burgdorferi (s. l.) infected ticks. B. garinii is by far the most prevalent species isolated from seabirds and I. uriae, even though occasionally also B. lusitaniae and B. burgdorferi (s.s.) have been found (52).
As discussed earlier, B. garinii is one of the most prevalent species found among I. ricinus and I. persulcatus in Europe and Asia.
However, the marine infection cycle increases the habitat to include also the North Pacific Ocean (Egg and St. Lazaria Islands outside Alaska, USA) and the North Atlantic Ocean (Gull Island, Canada). This suggests B. garinii is present on both the West and the East coasts of North America (10, 53)."
Happy reading! Elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
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posted
I had the Advanced Labs culture test and have a photo of a darling lil' ol' spirochete grown from my blood.
I had the Polyclonal Immunostaining. According to the Advanced Labs website, this option detects the "presence of Borrelia burgdorferi sensu lato (which includes Borrelia burgdorferi sensu stricto, Borrelia afzelli, and Borrelia garinii)... and it has been demonstrated to identify Borrelia Hermsii, as well."
Since I've had a positive test and multiple symptoms, I believe the Advanced Labs culture is correct.
As to garinii, does it matter if it is proven it is in ticks in the US? Does it matter which strain of borrelia I have? I'm sick.
I've been on antibiotics for 11 months. I'm not getting better fast.
Another crime, in addition to the unreliable testing available to date, is the lack of effective medication to knock down this disease.
Has any reporter questioned Barbara Johnson about her conflict of interest? Is there a way to do this?
Posts: 1 | From Montana | Registered: Apr 2014
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posted
Not only is the track record of the CDC regarding Lyme terrifying. When it comes to other tick/vector borne infections the policy gets even worse.Their attack on the big study of bartonella infection from NCSU is typical. The level of competence is schocking , the cynicism terrifying. I believe the only answer is to promote the Tuttle petition in "Activism"
posted
On Medsscape, a debate about the CDC warning is going on.One "Thomas Anderson" is bringing forth the exact same kind of reasoning as Lymefor15years above. http://www.medscape.com/viewarticle/823840 One has to be a Health care professional to post there, and it is clear that Thomas Anderson is one.For a good advice aoput your positive culture Lymefor15years ,it might be a good idea to contact this knowlegable professional for an evluation.
Personally, I feel confident that the fact that the J of Clin Microb. has accepted Macdonalds response to the CDC is an indication that CDC has a weak case.Be that as it may.Many many other possible ways of constructive action by the CDC would have been possible to the benefit of Lymefor15years and the rest of us. Support the petition in "Activism"
posted
Hansemand, I dont think Thomas Anderson, who is a psychologist, is an expert in interpreting Blast or Borrelia genetics.
I am not saying I am, but I am relying on the excellent information in Dr Macdonald's various comments and published material, and the Clustal analysis publsihed by Dr Sapi.
I believe that Anderson's attack on Dr Sapi (see below) is completely unwarranted.
He is basically just parroting the CDC nonsense that garinii could not be in US.He has not offered any orginal points of his own.
And as we have seen from CDC Dr Barbara Johnson's patent, she HERSELF believes garinii is probably in North America. Please see my reply to Anderson and the Medscape discussion that preceded it below.
Elena ------------------------------
Elena Cook| Nurse/Advanced Practice Nurse just now Thomas Anderson, you yourself have mentioned that pyrG alone (and remember, we are talking of only a part of the pyrG gene) is not sufficient to resolve an isolate down to strain identification.
So you cannot then go on to conclude that the isolates all belonged to the Fuji P1 lab control strain, and accuse Dr Sapi of contaminating her cultures.
You should further bear in mind that 20 of Dr Sapi's isolates matched NOT ONLY Fuji P1, but also strain HP1, and a Russian strain from Ekaterinburg. (not mentioned in Dr Sapi's paper as it had not been deposited in Genbank at that time, but easily visible now due to a Blast search)
You state that pyrG can resolve the isolates down to species level, ie identifying them all as B. garinii. Dr Sapi herself clearly wrote in her paper that these isolates appeared to belong to garinii.
The failure of researchers to find garinii in USA could have many causes. Not least, the possibility that the type of garinii present there does not match primers that were used.
A further possibility is that these isolates are "garinii-like" in that small stretch of that one gene, but are like another species in the rest of their genome.
Garinii has been found in Mexico. Why would birds stop at the US-Mexico border?
Edit (in 45 minutes)
Like Maria Naab| Nurse/Advanced Practice Nurse - Surgery, Other 2 days ago I have had undiagnosed lyme, babesia, bartonella and mycoplasma for 23 years. Yesterday I finally got a positive Western Blot.
I was elated at finding out definitely why my life was stolen from me. I bet it was the Elisa test that missed the diagnosis at first and put me in the category of CFS.
It took months of antibiotics to deposit some lyme proteins into my blood since after this many years of illness it was in my tissues and not my blood.
I am so glad that another Western Blot finally turned out positive. I would have gladly paid $600.00 for more accurate testing. $600.00 pales in comparison to my medical expenses over 23 years, not to mention my lack of income.
I can't even put a price tag on the pain and disability and the fact that my 2 boys have never known a healthy mother. More accurate testing is needed so no-one has to go through what I had to..
FlagLike Dr. Sin Hang Lee| Pathology 2 days ago I am not here to defend the paper authored by Sapi and her coauthors. But some of Thomas Anderson’s authoritative announcements are questionable:
1. “27/50 of the culture samples in this study pyrG genes indicated they were B garinii without a doubt.” So what? Do the U.S. Courts always send the identical twin of a criminal to the death row because the identical twin shares the same DNA sequence with the criminal in their genes?
2. “they were clearly B garinii with the nearest other species at 93% similarity. That virtually guarantees all 27 were of the species garinii.”
It is debatable if a 93% similarity in DNA sequence between two bacterial isolates is always sufficient for borrelial species identification.
We should require a 100% ID match in a selected signature sequence for alignment algorithms to render the molecular diagnosis of a pathogenic borrelia. Aren’t we all concerned about false positive results?
The medical profession has become a “health care industry”, the term I first heard from the dean of an Ivy League medical school in 1973 in his departure speech. Unfortunately, Lyme disease was described after 1973. So the patients will have to suffer a little longer.
We never had this kind of problem when typhoid fever was discovered. The physicians then knew when to culture the blood for Salmonella typhi and when to perform Widal test.
FlagLike Thomas Anderson| Psychologist 3 days ago Everyone who comments on this seems to overlook the most obvious issue.
The group led by Sapi had the pyrG gene sequenced. The pyrG gene is a housekeeping gene used along with 7 others to identify a specific strain and species.
In order to achieve the resolution necessary to guarantee the ID of a specific strain, all 8 genes are used in a phylogenetic analysis. But in almost all cases, the pyrG gene alone can identify a specific species.
27/50 of the culture samples in this study pyrG genes indicated they were B garinii without a doubt. 20 of them had the same exact 603 nucleotide value.
When these 20 and then all 27 are run on the NCBI BLAST program for sequence comparison, they were clearly B garinii with the nearest other species at 93% similarity. That virtually guarantees all 27 were of the species garinii.
This phylogenetic analysis was also run and shown in the Sapi paper which clearly shows 27 clustered with B garinii and quite distant from B burgdorferi.
B garinii has never been found by any researcher after 10's of thousands of ticks have been analyzed by PCR looking for garinii since its common in Europe.
Its been found once in Newfoundland. Canada but never in the US after looking for 25 years. How is it possible that Sapi sampled patients from 15 states and found over half were infected with B garinii. Its impossible.
Its also impossible that 20 were identical and not directly related or clones. This whole thing is silly.
Nobody on the ALS/Sapi side has actually explained how over half can be a species never before found in the US and that 20/27 were identical....
There is only one explanation that's sensible. The ATCC FujiP1 B garinii used by Sapi to test the culture found its way into the patient cultures. All these other comments by Elena and others are avoiding the key issue.
FlagLike Forrest Gross| Nurse/Advanced Practice Nurse - Neonatal/Perinatal Medicine 5 days ago Bickering will not put the half-smile that is missing from a young girl's face, due to Lyme-induced Bell's palsy back where it belongs. My daughter recovered, but many continue to suffer sore joints, and much worse.
Did an infected deer swim across Long Island Sound from Plum Island's secret labs? Not likely. But many birds have made the crossing.
Regardless of sources, Lyme Disease exists. Whether un- or under diagnosed, it needs to be considered in EVERY case when symptoms are present. Any test that helps to do so should be utilized. Secret labs should be fiction not fact.
Flag2Like Dr. Erik Burman| Pathology 5 days ago There seem to be a number of polarized opinions commented here but very little clarity is proffered. A similar muddle of opinions is reflected in the lay population.
How has Lyme Disease become so politicized? The entire notion seems to have devolved into tribalism. Do you believe? Are you with us or against us? Sad.
Flag2Like Dr. Sin Hang Lee| Pathology 6 days ago The authors in Morbidity and Mortality Weekly Report (MMWR)April 18, 2014 / 63(15);333-333 stated “Published methods and results for this laboratory-developed test have been reviewed by CDC.
The review raised serious concerns about false-positive results caused by laboratory contamination and the potential for misdiagnosis (3)”.
So, the CDC’s serious concerns are about false-positive results caused by laboratory contamination, a technical issue, not the science of the blood culture test.
Cross contamination is a technical issue in any molecular diagnostic laboratories, and is the product of a poorly run laboratory.
It can be readily exposed by a routine proficiency survey conducted by a competent unbiased authority, such as the College of American Pathologists.
I recommend that the CDC prepare a panel of blind-coded simulated EDTA blood samples spiked with pure cultures of Borrelia burgdorferi sensu stricto, Borrelia garinii, Borrelia afzelii, Borrelia miyamotoi, Borrelia hermsii,
and various irrelevant microbes to be distributed by the College of American Pathologists to all laboratories which claim to be able to identify borrelial infectious agents in human blood samples for a proficiency survey.
The laboratories which return a set of correct answers must have their contamination problems under control.
I believe the CDC would agree that a true positive identification of any of the above-listed borreliae in the circulating blood of a patient is of clinical significance whether the laboratories are using an FDA-approved kit or not.
By the way, is there an FDA-approved test kit for infectious agents of borreliosis on the market?
Flag10Like Elena Cook| Nurse/Advanced Practice Nurse 7 days ago Thomas Anderson, you are not correct re Blastn.
Although BLAST is a sophisticated tool, even a novice can check this info as Dr Macdonald's letter has indicated:
2. In the box at the very top entitled "Enter accession number, gi, or FASTA sequence", enter the accession number for the Borrelia garinii Fuji P1 strain,
a control strain used by Dr Sapi and alleged by CDC to be contaminating her isolates. The accession number for the sequence for Fuji p1 filed by Johnson et al is KF170282.1
All of the following appear higher up in the table at the bottom than Dr Sapi's isolates. The table orders the results with the best matches at the top
These strains all score higher than Dr Sapi's isolates:
4Like Thomas Anderson| Psychologist 7 days ago Reply to “No Evidence for Contamination of Borrelia Blood Cultures: a Review of Facts” Barbara J. B. Johnson, Mark A. Pilgard, Theresa M. Russell.
Division of Vector-Borne Diseases, Centers for Disease Control and Prevention, Fort Collins, Colorado, USA
A basic obligation of a commercial clinical laboratory is to validate a test before offering it for sale to diagnose patients.
Advanced Laboratory Services offers a culture method to diagnose patients with a Borrelia species infection (1), but we do not find the evidence provided in support of this method by Sapi et al. adequate to establish that the new culture test has the clinical sensitivity (94%) and specificity (100%) claimed (2).
We disagree, therefore, with the opinion expressed by Dr. MacDonald in his letter to the editor (3) stating that the analytical methods of Advanced Laboratory Services are sound.
Sapi et al. sequenced a portion of a single gene after nested-PCR amplification and concluded that they had ruled out laboratory contamination.
Our analysis demonstrated that the vast majority of the patient-related DNA sequences were identical to those of the laboratory strains used to develop this culture method.
These identities can readily be seen in GenBank using BLASTn and support our claims (2). (One way among many to see these relationships is to enter the accession number of each patient associated pyrG sequence into the search box of the BLASTn program.)
The published data are insufficient to determine the source(s) of the DNA used by Sapi et al. to produce patient-related gene sequences.
Possibilities include borrelial cells, DNA, and/or PCR amplicons. Because 80% of the patient-associated sequences matched the controls over the region sequenced, the possibility of contamination cannot be excluded.
To show that purported Borrelia isolates from patients are different from control strains, more-robust analyses, such as multilocus sequence typing, would be required.
Flag1Like Dr. Patrick Aufiero| Infectious Diseases 7 days ago so why in hell is the FDA allowing this is to go on? the lyme literate idiot docs will exploit this loophole and suck patient for money in a test that has no validity. shut it down now!
FlagLike Tim Rhudy| Other Healthcare Provider 8 days ago I don't know anything about the 'new' culture test that was condemned in this article,
but I do know the CDC/IDSA guidelines have been very far from correct in their recommendations and guidelines for diagnosing and treating lyme and associated tick born infections - and it is taking patients away from their lives.
If you ONLY listen to the IDSA/CDS lyme cartel, as most physicians do, they seem to make perfect sense. They quote studies and speak confidently and appear competent.
If you read and research ALL the science - much of which the IDSA/CDC cartel deny even exists, and treat lyme patients or, heaven help you, contract lyme/tick borne diseases yourself,
it becomes very apparent that their positions are untenable and, perhaps, unconscionable and in no way merit such complete, apparent confidence (and arrogance).
The vehemence with which they have gone after those espousing different opinions, experiences, and actual science gives pause.
Flag15Like Dr. Alan MacDonald| Pathology 8 days ago Anyone with a personal computer and an internet connection can perform a DNA Sequence AUDIT
of the SAPI Borrelia Blood culture isolates.
DNA issues , specifically an Excess of 100% DNA sequence matches are the basis for an accusation by the Centers for Disease Control (Johnson et al) that TOO MANY 100% matches
in DR Sapi's borrelia blood culture isolates is evidence for CONTAMINATION of THE BLOOD CULTURES.
THIS is an ACCUSATION IN NEED OF FACT CHECKING!
CDC alleges that the Sapi et al results are in effect FRADULENT.
The CDC believes that they have discovered DNA Evidence for the ALLEGATION OF FRAUD.
THE CDC ALLEGES that POOR LABORATORY METHODS ALLOWED for CONTAMINATION
of Human Blood SPECIMENS resulted in UNTRUSTWORTHY RESULTS from ADVANCED LABS.
.
I have written a rebuttal letter to the Editor of the Journal of Clinical Microbiology which appears in the May issue of J. Clin, Micro, which points out that supercomputer searches of all DNA on the Planet
prove that the CDC AUTHORS ARE IN ERROR IN THEIR ACCUSATIONS AGAINST the Staff of Advanced Laboratories --- SPECIFICALLY
of sloppy laboratory techniques__ lLEADING TO CONTAMINATION--
of 41 human blood specimens
CONTAMINATED WITH WHAT???
THE CDC INSISTS THAT CONTAMINATIONwith LABORATORY CONTROL STRAINS of Borrelia ( species burgdorferi N=20 DNA SEQUENCE signature KF170282.1
and Borrelia Garinii N=20, DNA SEQUENCE SIGNATURE KF170281.1 and Borrelia Afzelii N=1; DNA SIGNATURE KF170280.1)
I have offered the readers a straightforward method for "FACT Checking" of these very serious allegations of SLOPPY LABORATORY BY ADVANCED LABORATORIES.
The Audit of DNA sequences with attention to those which have a 100% MATCH with Borrelia CONTROL
STRAIN DNA SEQUENCES
of Borrelia is extremely simple,
and does not demand that a knowledge of molecular biology and DNA
structure is required.
Here are the simple steps for all who are interested in "Fact Checking" the Centers for Disease Control:
1. Use any search engine to navigate to the " BLASTn" website. This is the free access point to the
US government's supercomputer which has the ability to search every DNA structure on the planet.
2. When the BLASTn site is on the screen; enter the search term in the search "box" :
"KF170281,1". Next scroll to the bottom of the screen and left click with the mouse the"SEARCH"
box. Results of the search of all DNA sequences which closely match the DNA sequence of
"KF170281.1".
3. Print the Results and save the print out.
__________________________________
Repeat steps 1,2,3 above but substitute "KF170282.1" in the search box.
Print the results>
____________________________________
Repeat steps 1,2,3 above but substitute " KF170280.1" in the search box
print the results
____________________________________
Examine the print outs.
Look for the identifier label " JX86####,1" in the column in the right hand hand
margin. The "JX86####.1 " are labels for the Sapi Blood Borrelia isolates. Look carefully at the
adjacent column to see if any of the JX86####.1 cases show a "100%" result.
The audits of DNA searches for "KF170280.1,KF170281.1, and KF170282.1 will demonstrate
that the CDC ALLEGATIONS
of 40 cases with 100% matches for "JX86####.1"
DO NOT APPEAR in your print outs
of the Supercomputer searches of DNA sequences on record.
In brief, the Search with BLASTn FAILS to DEMONSTRATE an excess of perfect (100%) matches
with JX86 ( Sapi) isolates using searches for KF170281.1 and KF70282.1.
The CDC asserts that
the supercomputer shows 40 perfect (100%) matches
in the KF 170281.1 and KF170282.1 searches.
THE CDC ASSERTION IS NOT SUPPORTED BY THE PRINT OUTS ON YOUR PERSONAL
DNA SEARCH OF ALL KNOWN DNA STRUCTURES
BY THE GOVERNMENT SUPERCOMPUTER.
FALSE ASSERTIONs by the CDC are UNMASKED BY YOUR PERSONAL DNA AUDIT.
If an excess of 100% DNA matches between the CDC sequences KF170281.1 and KF170282.1
were in fact detected by the supercomputer, you would see many many "100%" matches
in your PRINT OUTS.
100% matches ARE ABSENT --- with the exception of ONE case --(using search term KF170280.1 -B.Afzelii)
This single case is far short of 41 perfect matches (100%) as alleged by the CDC.
Contamination due to an excess of 100% matches of HUMAN BLOOD BORRELIA SPECIMENS WITH LABORATORY CONTROL DNA SEQUENCES__
is EXCLUDED.
There is NO EVIDENCE of 40 DNA perfect matches in Dr. SAPI's DATA, WITH LABORATORY CONTRLS
and therefore
the BLASTn search proves that a unique DNA structure identifies each and every SAPI Borrelia DNA AS GENUINE.
These results ELIMINATE ANY SUPPORT for Contamination in the ADVANCED LABS RESULTS.
Respectfully submitted,
Alan B. MacDonald MD
April 18, 2014
Flag11Like K C| Health Business/Administration 8 days ago I have a 15 yo beautiful daughter who is now paralyzed from the hips down, on total TPN and hasn't eaten since August 2013 and has clonus and can no longer read.
She hasn't been to school in two years-she has had multiple positive Lyme tests and all other tests negative. Yes, all from Lyme that went undiagnosed since 2008 and was finally diagnosed after a reinfection.
Because of this sort of game playing illustrated by this article, too many of the doctors and specialists that we have asked to help my daughter reply with "Lyme couldn't have done this"--
I want to know WHAT COULD have done it and what disease could affect a perfectly healthy teen with no family history and clean genetic testing and steal her life from her in a 18 month period of time??
Quit lying and cheating and realize there are individuals and families and futures you are impacting with your selfish actions CDC!!
I am outraged and saddened and frantic when I hear how our government and way too physicians dismiss the existence of a disease that steals life and put SELFISH interests before those of patients-
who many are children who should have their government and adults protecting them.
Seems so pathetic--please think of the future of our children and makes me think hard about why "warning" justified---what are you afraid of CDC??
Flag18Like Dr. Edward McDevitt| Orthopaedic Surgery 8 days ago it will be great when we develop a laboratory test for the actual organism.
Flag5Like Elena Cook| Nurse/Advanced Practice Nurse 8 days ago I think it is time for medical and other health professionals to know the facts regarding this excellent and much-maligned Borrelia culture test.
The warning published by Dr Barbara Johnson, along with various EIS officers at CDC in their bulletin MMWR is based on Dr Barbara Johnson's own paper condemning the test in the Journal of Clinical Microbiology in August 2013.
Dr. Johnson's paper, on close examination, raises great concerns of its own.
One of the main tenets of Johnson's argument was that the results published by Dr Sapi must have been due to contamination of her cultures by lab control strains.
CDC's Dr Ben Beard (co-author of the MMWR warning) was unaware at the time that the two sets of material were 200 miles away from each other , when CDC made this allegation. Yet he refused to have CDC retract it after being informed.
Dr Johnson alleged that only contamination could explain the large number of American patients' samples which grew Borrelia garinii on culture,
citing the fact that CDC has always maintained that the only species of Lyme Borrelia infecting US patients in Borrelia burgdorferi sensu stricto. (B. garinii is well-known in Europe and Asia).
This ignores not only the the fact that Americans travel abroad to tick-ridden areas, but more significantly, the following:
It has now been clearly established in the peer-reviewed literature that the US is home to other human-pathogenic Borrelia causing a clinical picture identical to Lyme,
and that some of these (eg B. miyamotoi) are not even part of the Bb sensu lato group, never mind restricted to one strain within it (Bb sensu stricto).
New evidence suggests B. garinii, which is highly associated with neurological disease and with birds as tick hosts, may well be in North America.
In addition Borrelia are notorious for the number of DNA recombinational events far in excess of the mutation rate. This could in theory result in a pyrG sequence which matched a different strain, such as garinii.
What is not widely known is that Dr Johnson HERSELF, in a patent published just weeks before her 2013 paper condemning the culture test as invalid because it found many garinii-positive US patients, wrote the following:
"B. garinii has been found in pelagic bird colonies off the coast of North America, so there may be potential for infection by this agent in North America." (See Patent WO 2013110026 A1
Having written that in her own patent (published July 2013), it was surely the height of hypocrisy to then condemn Dr Sapi et al for reporting having cultures B. garinii from US patients' blood.
Spanish researcher Dr Elena Gomez-Diaz of Spain studied Borrelia garinii strains across a huge geographical area, from a very wide range of ticks, including seabird ticks (well-known vector of B. garinii)
She used multi-locus sequence typing which included a portion of DNA was from the same part of the pyrG gene used by Dr Sapi used in her study, and which CDC have indicated render Dr sapi's published results invalid,
by stating that that the degree of identity between that portion of DNA sequence in the patients' sera and in the control strains was implausible, unless contamination had occurred.
But in fact Dr Gomez-Diaz found large numbers of B. garinii strains which had a 99% DNA match to each other at that locus - yet they were all distinct strains, some from seabird ticks, some from Ixodes ricinus (European sheep tick),
and from locations as far apart as France and the far eastern part of Russia which is of course not so far away from Alaska and the west coast of US.)
To add insult to injury, in Dr Johnson's 2013 paper, she published data relating to portions of pyrG which she stated she had sequences and deposited in Genbank.
However a search for the accession numbers she gave by Dr Alan Macdonald, who was involved in developing the culture test, revealed that there were no such sequences present in Genbank at the time of publication.
Therefore it is not possible that a comprehensive peer-review could have occurred without such key data so central to the accusation of contamination.
After Dr Macdonald flagged up the absent DNA sequences in an open letter to CDC's Dr Ben Beard, the sequences finally appeared in Genbank - though somewhat different to what had been published in the paper.
I am sorry to say that CDC and their Epidemic Intelligence Service (EIS) officers have seriously lost the plot.
By condemning a sound culture test, they have slammed the door of hope shut on thousands of patients suffering chronic Lyme disease.
CDC themselves recently admitted their published incidence rate for Lyme Disease does not reflect the number of cases diagnosed in the US, and that their figure was off by a factor of ten.
One would hope they would reflect on the damage done by this gross under-estimation of an epidemic that is spiralling out of control.
Instead, they prefer to shoot the messenger, trying to discredit an excellent test which could aid diagnosis and see patients treated.
A recent FOIA request revealed CDC and Dr Allen Steere collaborating to bury data which showed the current CDC-recommended testing protocol,
I would like to add that I have no connection whatsoever with the Advanced Labortory company and do not benefit financially in any way from the culture test. My interest stems from my advocacy for Lyme Disease patients.
Of course , it is legitimate for everybody to discuss the validity of the results of Advanced Labs- good luck-.
Normally this "academic" discussion should unfold without bringing in play the context- that is the role of CDC in probably the biggest medical scandal ever with endless suffering and deaths as a consequence.
The only thing to do , is to try to stop the cynicism of this Agency. Support the petition in "Activism".
If you want to lead an academic discourse regarding your result this is hardly the place.Most of us lack the necessary knowledge.
You should complain to/discuss with the lab because you find the result flawed.
If you seek advice from Fellow sufferers, information regarding your previous test-results etc etc would be natural.
The tragedy unfolds again when it comes to Bartonella. CDC lets one of its "friends" write up a publication that states thatBartonella spp are not proven to be tick transmitted.
A scientist with no experience in the field at all. (It has been proven. )Bartonella are extremely difficult to culture. The scientiststs that have managed to do this are then attacked. Etc Etc Endles shame on them.Shame
................................................
Breaking up the post for easier reading for many here -
posted
Lymedfor15Years, please discuss topics without sarcasm and an argumentative tone. This is a support board. If you'd like this type of debate, you are at the wrong place.
It doesn't appear that you are looking for support in your illness, or that you are trying to support others in their fight, it appears that you are here to argue this particular topic since it's the only place you have posted. Please discuss respectfully.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
In Lymeneteurope several professionals discuss this topic.Some are clearly officials hiding their identity, but NOT patients.
This would be a better fourum for your "concerns" lymefor15..., if you are not there already. In order for anyone to have the test, you need a doctor.(you are luycky to have one that will order testing)-What has his comments been? What has the lab replied to your concerns? Does the result fall in line with a clinicl evaluation?
Fishy,I believe.And to be frank, I doubt your motives for posting. I sincerely hope I am wrong.Being right would be depressing.
For many, I believe, the above posts point to the urgent need for an investigation of the CDC and their incredible methods.Sign the petition.(Now 19.700 supporters)
This is no surprise. Last year, when the first CDC paper came out. libelling Dr Sapi and accusing her of contaminating her cultures, we had Dr Edward McSweegan here pretending to be a patient called "Tom Eames", who was "very disappointed" in the culture test.
He had created a false identity and kept it going for year and a half or more, just for the purpose of discrediting the test.
Fortunately some of us grew suspicious and then Dr Alan Macdonald came to Lyme Net in person and tore his little charade to pieces.
The fact that the Denialists have to resort to this kind of nonsense shows that their scientific arguments are completely bankrupt - they can only "win" by such means.
elena
-------------------- Justice will be ours. Posts: 786 | From UK | Registered: Oct 2007
| IP: Logged |
posted
@Elena As a person living in the UK you know the far reaching effects of CDC policies throughout the World. There is a need for holding criminals like "Lymefor15years" accountable for their crimes. We shalll have to try Congress- have your friends and family sign the Tuttle petition in "Activism" Extremely important.
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