Why aren't persisting spirochetes enough evidence of infecti

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
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LHCTom
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by LHCTom » Sun 13 Jan 2013 20:57

My understanding is that a University study of the ALS culture will be published soon. It will show with 72 patients, a 100% specificity and 94% sensitivity against a strict CDC criteria patient population. No false positives. It uses a combination of monoclonal and polyclonal staining plus PCR to verify the Borrelia. I doubt even this independent validation will move the doubters on persistence but it may help with the doctors and scientists with no stake and not wed to the dogma. My understanding is a second validation is also underway that should yield a second independent validation paper. Once a validated culture with good sensitivity is available outside researchers ( many of whom are deniars ) labs, the IDSA gang will begin to lose control of the scientific results. Hopefully this will lead to greater Congressional pressure on the NIH and CDC to take a "real", non biased look at chronic and persistent Borrelia infections. It will also make it much easier to analyze the DNA of "real" cultured chronic diverse cases so the problems with the CDC2T testing can be identified plus the actual strain/species of infections can be understood. To date, most of this research has been conducted with study designs overseen by IDSA doctors who have a stake to defend by biasing the designs. It should be interesting.
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

duncan
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by duncan » Sun 13 Jan 2013 21:27

LHCTom, do we know the University? Also, is it for early lyme only, or were different stages part of the validation inquiry? I understand you may not know, but thought I'd ask. And is there a date?

Bagge
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by Bagge » Sun 13 Jan 2013 21:49

LHCTom wrote:My understanding is that a University study of the ALS culture will be published soon. It will show with 72 patients, a 100% specificity and 94% sensitivity against a strict CDC criteria patient population.
LHCTom, if the study is due to be published soon, then the name of the journal should already be established, as well as the expected date of publishing. Which journal and what is the anticipated date it will be published? One would hope their study included testing against uninfected samples, thus resulting in a negative culture. I'm sure the medical community would embrace any test that is indeed evidenced as accurate and holds up to peer review and validation tests by respected experts. (no Detroit tap water, I hope)
.

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LHCTom
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by LHCTom » Sun 13 Jan 2013 23:08

They did not share the journal nor University name. I understand not wanting to share pre-publication. As I said, when it comes out, it will be interesting how thorough the study was. My understanding was there was a control group of which none were false-positive. I recently did the culture and am waiting for the DNA PCR testing. The polyclonal antibody verification was positive at 4 weeks. The DNA PCR is claimed to detect any Borrelia species and is not specific to only B burgdorferi. The monoclonal antibody is B burgdorferi specific while the Polyclonal or DNA is intended to pick up any Borrelia burgdorferi sensu lato including B. afzelii and B. garinii for European patients. It won't ID the strain or species but won't miss the B. afzelii and B. garinii. I know B. bissettii and a variety of CA only Bb. strain infections were found here in Northern CA by Dr Lane. I will be asking for more details when my results are in.

I will have DNA results in about 3 weeks. Hopefully the paper will be coming soon and then we will know.
The greater the ignorance, the greater the dogmatism.

Attributed to William Osler, 1902

duncan
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by duncan » Sun 13 Jan 2013 23:38

Cool. Thanks. Looking forward to hearing more.

nnecker
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by nnecker » Tue 15 Jan 2013 15:47

Well here is a nice little tidbit about the CEO of ALS, Raymond Mirra ( http://www.npidb.org/organizations/labo ... 72315.aspx )he may,and I emphasize the word "may", have ties to the mob:

http://www.nydailynews.com/newyork/excl ... -1.1139590

I swear,you can't make this stuff up lol.

Camp Other
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by Camp Other » Thu 17 Jan 2013 0:11

nnecker wrote:Well here is a nice little tidbit about the CEO of ALS, Raymond Mirra ( http://www.npidb.org/organizations/labo ... 72315.aspx )he may,and I emphasize the word "may", have ties to the mob:

http://www.nydailynews.com/newyork/excl ... -1.1139590

I swear,you can't make this stuff up lol.
Perhaps the truth in all of the above story will be made clear once this woman has gone to trial and her claims about Mirra have been thoroughly investigated. "May" is an appropriate word to use in this case, because the article indicates that after some investigation no ties to the mob could be found despite the allegations being made... In end, when it comes down to it, the biggest tragedy was the death of a child.

What bearing does your comment have on whether or not a culture test is valid?

nnecker
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by nnecker » Thu 17 Jan 2013 2:10

If you dig into Ray Mirra's background it looks shady.He sold Allion Heathcare, the company that was involved in the HIV black market prescription drug racket. What"s up with that?
His ex wife and business partner Gigi Jordon has made a lot of accusations against him which look very interesting if you look at them in detail.

Unfortunately I can't make the links work,but if you want to look at them go to or google : gigijordonbail.com. Click motions.Look at bail motion statement of facts section E.There is some interesting stuff in there.

Also google:(gigi jordon wordpress offshore trusts),look at the( pdf 1 section 1 introduction this is an overview of offshore trusts) again,there is some shady stuff going on there.

Now after you read this,I ask you,If just half this stuff is true,would you trust anything coming out of this lab he owns?I know I would not.

Camp Other
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by Camp Other » Thu 17 Jan 2013 3:29

nnecker wrote:If you dig into Ray Mirra's background it looks shady.He sold Allion Heathcare, the company that was involved in the HIV black market prescription drug racket. What"s up with that?
His ex wife and business partner Gigi Jordon has made a lot of accusations against him which look very interesting if you look at them in detail.

Unfortunately I can't make the links work,but if you want to look at them go to or google : gigijordonbail.com. Look at bail motion statement of facts section E.There is some interesting stuff in there.

Also google:(gigi jordon wordpress offshore trusts),look at the( pdf 1 section 1 introduction this is an overview of offshore trusts) again,there is some shady stuff going on there.

Now after you read this,I ask you,If just half this stuff is true,would you trust anything coming out of this lab he owns?I know I would not.
Haven't read the bail motion statement or facts - yet - but I will. I see what you mean about the HIV black market prescription drugs... no, don't know what is up with that.

But see, even if Mirra has shady dealings (and the word is "if"), I still have to ask if that would invalidate a culture test.

Refer to: http://www.lymeneteurope.org/forum/view ... 828#p28411

And this paragraph:
Advanced Laboratory Services Inc. (ALSI) has announced a new culture test for Lyme disease. (...) The new test is based on research conducted by Dr. Eva Sapi and colleagues, which CALDA helped fund. Results of the research published earlier this year demonstrated the improved culture method for Borrelia burgdorferi, the agent of Lyme disease, and the technique has recently been corroborated using human blood samples. Larger confirmatory studies of the test are now being pursued. Dr. Joseph Burrascano, a pioneer in the treatment of Lyme disease, consulted with ALSI to help make the test commercially available.
The research done by Sapi et al is supposed to back this culture. (I also found a patent which might be related to the technology used in the culture, and Mirra's name was NOT on it.) Far as I know, Mirra has nothing to do with the development of the culture test itself in New Haven.

Henry suggested a sort of litmus test for this culture a while back which would require sending blinded samples that were externally validated for being negative or positive for submission for evaluating the ALS culture test. Doing something like that is probably the best way to get your answer about the culture test.

nnecker
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Re: Why aren't persisting spirochetes enough evidence of inf

Post by nnecker » Thu 17 Jan 2013 3:55

I don't know what ALS is worth,but maybe Mirra will sell it as well.Who knows maybe to Nick Harris or Burrascano?To me,you can't have a successful Lyme Lab with an owner who is connected to the mob, no matter if the test is legit or not.

This should be a very interesting trial.If Mirra comes out of it smelling like a rat,then you have to question Burrascano and Sapi's reputation as well . Why would they get involved with a person like that?

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