I wonder if people in NIH Lyme research studies even get tested for all the possible Bb agents.
Sometimes I wonder if researchers are always really looking all that hard...
I'm not even sure the NIH Lyme team has been consistently dedicated solely and exclusively to Lyme, or even to TBD's - despite an estimated 300,000 cases of Lyme annually in the US alone.
No. When I first began to try and sort out whether I had Lyme or not by reading studies, one of the first things I noticed was how the Europeans discovered the CDC 2T test based on Bb B31 was not effective in Europe due to their species genetic differences impact on surface antigen dominant epititopes. Then I read they had found 3 common species garinii, afzelii and Bb and another handful of less common species. Then I read that the CDC and US researchers were adamant that Bb WAS THE ONLY SPECIES IN THE US PERIOD! The first thing that came to mind was when Edwin Hubble first realized that the universe contained galaxies and that the Milky Way was not the entire galaxy. Up until Hubble "looked", the other 199 Billion galaxies were "missed"= Oops!
I thought the Europeans were like the Edwin Hubble while the US CDC and researchers were like everyone who didn't believe it and its implications. Every time a researcher has "looked" and found other less common species in the US, the Lyme research community and CDC has jumped all over them claiming they were wrong or it was in ticks but non-humans. But ticks bite humans and one needs to look at humans with the proper tools before claiming there isn't one case missed in the US due to serology focused on one East Coast species while knowing the sensitivity is based on genetics of the surface antigens.
Then I watched in amazement while the CDC and West coast researchers found B. bissettii, B. miyamotoi and other non-Bb species in ticks. But everyone denied it was a problem. Then in 2011, an outbreak in Russia of all places re-taught a long forgotten lesson and suddenly B. miyamtoi was a hot topic and sure enough its infecting humans and just like in Europe, the Bb B31 test doesn't work. Duh! Smart people can be really dumb! But the lesson has not been applied beyond B. miyamotoi. Duh! And the Bm reality has not flowed down to front line doctors with a good test. Just go read the CDC website about "the test is coming based on PCR". PCR does not always work. If there are not a few spirochetes or microbes of interest in the PCR sample, you won't find the DNA fragments. Duh!. Another lesson not well applied based on how chronic infections work.
Then I read the CDC's version of the C6 tests study and heard they had decided its <1% less specificity than the 2T was the basis for not recommending it. When I looked at the list of conditions used to look for possible cross reactivity, it included things like RA but nobody thought to include non-Bb species of Borreliosis or other infections that mimic Lyme symptoms. That's either being really dumb or evil. Probably dumb. If only a handful of the people in the study had B. miyamotoi, B. americana, B. bissettii, Brucella or a long list of infections etc.., that would have swung the specifictity to better than Bb, unless you use semantics to define Lyme and pretend you never heard of the European discovery/realization. This of course is only one issue but its a REALLY OBVIOUS blunder. It would be akin to the US CDC researchers and CDC still denying that the Milky Way was the entire universe.
I've read studies that showed cross-reactivity between any number of other infections and Borrelia surface antigens. But nobody thought to look for other species or infections in people who tested near positive. Its shocking.
Then of course the CDC position is used to educate 10's of thousands of front line doctors who think the CDC 2T is the be all end all rather than realizing its a probability problem and with 360,000 infections ( previously 30,000), even if 1% were a non-Bb species, that's 3600 missed cases. And in CA, the ratio of just Bb to Bm is in the 1/4 - 1/2 range in ticks. So maybe the low Human occurence on the West Coast has something to do with the Rocky Mountains causing a genetic barrier and even Bb strains are sufficiently different to lower the CDC2T test senstivity, forgetting that B. bissettii and B.miyamotoi are found here regularly plus others. Its like when Hubble saw M31 and everyone decided there were 2 galaxies in the Universe missing now only 199.999...Billion. If there are 2, maybe there are 3 and then maybe 4 and on and on.... Missing even 1000 patients is not ok!
So, now onto my own personal experience. There is this IDSA physician who wrote in a local medical magazine and said to me personally, we ( not sure who we is) have not seen one case of Human B. miyamotoi in CA. He did not realize his own lack of testing or "looking" was the probable reason given its been found infecting US and Eurasian people once they actually "looked" properly. In CA, the ratio of Bb to Bm in ticks is higher than in the other places where human infections have been found. As yet, there is not a "good" serology test for Bm except one used for Relapsing Fever but Bm is halfway between RF and Bb genetically. Its not clear its a good test at all. And PCR requires you catch it during the febrile period near the beginning of the infection and not later chronic stage. If you intentionally use a poor telescope, you will think M31 is a star not another Galaxy.
The NIH researchers use very poor telescopes to study Cosmology and are almost 100 years behind. And this is just the Lyme and genetic changes in strains and species and doesn't count the many issues including other infections that can mimic chronic Lyme as I've mentioned before. Its just bad science. Even Einstein couldn't accept the Universe wasn't steady state and expanding or might eventually contract and denied Quantum Mechanics even though he laid the foundation in the 1905 paper for which he received a Nobel Prize. But he was near the beginning while the CDC and Lyme researchers have no shortage of facts and knowledge from which to see the obvious. And the front line doctors are the blind being led by the blind.
Its so sad. Maybe they should bring in some forward looking scientists or at least tell doctors to use an algorithm that works better.
The greater the ignorance, the greater the dogmatism.
Attributed to William Osler, 1902