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Deceitful Lantos Paper Alleges 80% False Positives in Lyme
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elenacook
Regular Member
Joined : Jun 2014
Posts : 199
Posted 7/25/2015 7:09 PM (GMT 0)
Dr Lantos, who failed to declare his lack of impartiality before joining the panel that reviewed the appalling IDSA Lyme guidelines and found them to be just fine, has done more harm to suffering patients all over the world, this time by authoring a paper that claims that in areas of "low prevalence" of Lyme, 80% of positive Lyme tests are false.
Let's first ask ourselves how an area is determined to have "low prevalence" in the first place , especially in the context of reliance on unreliable serology.
For example, CDC still claims there is no Lyme disease in the south of the US, when in fact Borrelia lonestari (which is not detected on standard Lyme tests) is present and so are patients with EM rashes and all the hallmarks of Lyme.
Here is Tom Grier's excellent take on Lantos' shameful paper. (Tom Grier is a microbiologist who has suffered from severe chronic neuroborreliosis for many years himself.)
"It doesn't take much to point out some errors in this study.
Most of the errors are the assumptions that are made about
serology testing and the lack of the ability to confirm supposedly negative tests.
The conclusion of 80 % false positive is completely based on assumption.
Here are some points to consider:
Lyme disease tests are made using antigens from B31 Laboratory strain, a strain not found in ticks or nature.
B31 only represents Borrelia burgdorferi and according to the NY Dept of Health Two-tiered testing missed 82 % of Lyme cases in New York State.
There are 11 species of Lyme-Borrelia that are consistently not found by B31 based tests.
These tests efficacy are determined by infecting mice with B31 and then when the mice produce antibody at the peak time they are then tested with the B31 test.
So a Bb not found in nature is put in a mouse model and is measuring mouse antibodies.
When the same tests are used in the real world in humans against wild strains found in nature the tests are far less predictive or accurate.
Approximately 50 % innaccurate (see below reference)
Finally if you are going to say a patient has a false positive, you better back that statement up with a brain autopsy because we find seronegative patients with spirochetes in their brain, heart, bladder, testes etc.
When the boy in New York died, he had equivical and negative Lyme tests.
The Health Department chose pathology to rule his death as caused by Lyme disease infecting his heart. But other argued the pathology was unnecessary because his blood tests were negative.
Lastly Borrelia myamotoi is becoming increasingly prevalent simply because we can now test for it. Bm also has a pr
opensity or tropism to enter the brain.
Did they test for B. miyamotoi?
Did they do brain autopsies or any pathology to put their infallible tests to the test? No they did not.
This paper is essentially another opinion based position paper because they did not even question the poor design of a study that reaches a conclusion that is bizarre.
Since the patients lived in a low endemic area, they assumed the positive tests from these patients are meaningless? Is that science?
Did they even consider to test for B. bissettii, B. americanum. B. kurtenbachii, B. miyamotoi or newly emerging Lyme species?
Contrary data Testing:
NY Dept Health 1996:
found CDC 2-tiered testing missed 82% of positive
Lyme cases. Dept of Health report to CDC April 15, 1996
Johns Hopkins study 2005:
found CDC 2-tiered testing missed 75% of positive Lyme cases
IDSA Lyme Disease Guidelines
Interlaboratory Comparison of Test Results for Detection of Lyme Disease by 516 Participants in the Wisconsin State Laboratory of Hygiene/College of American Pathologists Proficiency Testing Program
LORI L. BAKKEN, STEVEN M. CALLISTER, PHILIP J. WAND, AND RONALD F. SCHELL
55% of 516 laboratories could not accurately identify serum samples from Lyme disease patients. containing antibody against Borrelia burgdorferi"
Traveler
Elite Member
Joined : May 2007
Posts : 36573
Posted 7/25/2015 8:47 PM (GMT 0)
Lots of times, when you read the actual report, I've noticed that they will tell you that they looked at medical claims or medical records - which leaves us pretty scr*wed in areas like mine, where the doctors refuse to diagnose Lyme even if you walk in with a perfect bulls eye rash and classic symptoms. They simply refuse to diagnose it.
Not sure how we fight this, but we absolutely have to find a way.
sebreg
Veteran Member
Joined : Jun 2015
Posts : 1925
Posted 7/25/2015 9:26 PM (GMT 0)
It is a beautiful loop, it doesn't exist if it hasn't been documented in this area. Therefore when you present with a case they don't document it because it is not actually possible. So no cases ever get documented and the knowledge remains in a self-fulfilling loop of denial.
Rather like a Kafka novel I'd say.
gregkdc
Regular Member
Joined : Feb 2015
Posts : 147
Posted 7/25/2015 10:32 PM (GMT 0)
They can't keep denying it forever either it will prove itself to be true or fizzle out, and things are only getting worse.
I personally believe that they are waiting for a viable vaccine and then all of these IDSA guys with a conflict of interest in pharmaceutical companies will flip flop on their position. They will suddenly go on a rampage declaring how bad it is and that it is everywhere as a mass marketing campaign for their patented vaccine. Look at how bad the establishment hyped west nile virus and it is nothing compared to the number of people infected with lyme.
I don't understand this endemic area horse crap either. I am pretty sure I contracted lyme 14 years ago when I was out of state for college in an endemic area, but no Dr. I have been to ever thought about
that. I am sure I'm the only person in the country that travels to areas that have it or that no animals ever migrate from those areas. Not to mention all of the other sub species of borealis and that Utah has the pacific dear tick. sorry I will stop ranting it just gets old as all of you know.
elenacook
Regular Member
Joined : Jun 2014
Posts : 199
Posted 7/26/2015 5:12 PM (GMT 0)
If we are to wait till they develop a "successful vaccine" , we may have to wait forever.
One of the hallmarks of Borrelia is its ability to play games with the mammalian immune system, presenting one set of outer surface antigens, then, just as the body is getting its antibody production into gear, switching to a totally different set, which will go unrecognised by the immune cells doggedly pursuing the antigens that are no longer there.
Eventually, the immune system catches on, makes antibodies to deal with the new set, but - hey presto - borrelia switches its antigens again.
Add to this the fact that there are many species and countless different pathogenic strains, with lots of genetic variability such that the proteins that trigger antibodies in the lab with one strain could be too dissimilar from those of another strain to be of any use in the vaccinated individual, even without the antigenic variation tricks practiced by Borrelia.
As for the conflicts of interest, the problem is deeper and darker than just that. Please see my articles posted here for an idea of why:
https://www.healingwell.com/community/default.aspx?f=30&m=3418432
https://www.healingwell.com/community/default.aspx?f=30&m=3418435
https://www.healingwell.com/community/default.aspx?f=30&m=3418441
Elena
sebreg
Veteran Member
Joined : Jun 2015
Posts : 1925
Posted 7/26/2015 6:18 PM (GMT 0)
I have to be careful as I feel angrier as I keep recovering. And reading stuff like this... man oh man.
I feel like I've had to fight tooth and nail to get access to any treatments and a proper dx. It took 10 years. I should be thrilled that my health is improving, instead I'm furious, as it is a confirmation of what I needed to get better and had always been denied in spite of me and my mom's intuitions of chronic infectious disease. We thought of lyme so many times but the drs adamantly refused it, citing my negative ELISA as 100% confirmation that lyme was not in play.
And my treatments are something that if the IDSA had its way they'd prevent me from having any ability to access. IDSA policies have allowed me to be misdiagnosed for 10 years and even if I had been dx'd, I wouldn't have been given the access to proper treatment and they deny my situation is even legit chronic infectious disease.
I won't live this anger and I'm not proud of it. But it's going to take a hell of a long time to deal with. I would be fine if I could chalk up my past 10 years to illness, it sucks but that's ok, but knowing it could have been prevented and I could have avoided the suffering of Job and that there are people who are trying to deny my experience and lock up treatments that have brought me back from the dead because of their monstrous conflicts of interest and $$$... well holy smokes it puts me in a righteous furious state.
I work as an artist, and I guarantee you, once I'm back working, I'm going to devote some energies into nailing those IDSA nerds.
happyjo
Veteran Member
Joined : Sep 2014
Posts : 1406
Posted 7/27/2015 1:15 AM (GMT 0)
https://www.youtube.com/watch?v=8dzxGlcErUo
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