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Best Labs and testing procedure for Lyme?

JBB

Senior Member
Messages
188
Hey guys,

I have seen a lot of people seem to be using IGeneX or Infectolabs.

1. Are IGeneX and Infectolabs these the top Lyme labs in the world and the typical ones used by us?

Also with regard to testing I am wondering about breaking biofilms and antibiotics before the test to try to provoke more of a reaction (particularly with CPR surely this would make the test more able to pick up the broken bits of DNA). Does anyone do this / have Drs who recommend this? I did a doxy challenge ages ago and it did nothing to me although I took no biofilm breakers. So...

2. Should one break biofilms / hit Lyme with a killing agent before testing to improve chances of a positive result?



Look forward to your replies,

J
 

JAH

Senior Member
Messages
497
Location
Northern California
Hey guys,

I have seen a lot of people seem to be using IGeneX or Infectolabs.

1. Are IGeneX and Infectolabs these the top Lyme labs in the world and the typical ones used by us?

Also with regard to testing I am wondering about breaking biofilms and antibiotics before the test to try to provoke more of a reaction (particularly with CPR surely this would make the test more able to pick up the broken bits of DNA). Does anyone do this / have Drs who recommend this? I did a doxy challenge ages ago and it did nothing to me although I took no biofilm breakers. So...
2. Should one break biofilms / hit Lyme with a killing agent before testing to improve chances of a positive result?


Look forward to your replies,

J

I am also interested in this subject. I had a new Lyme test done at a lab in Milford CT, which was negative. (I have also had several igenex tests done) And would like to know if there if there could be any benefit to my getting the infectolab test as well.

"The Molecular Diagnostics Department of Milford Medical Laboratory is the first, and at present, the only licensed clinical laboratory in the United States to offer a combined DNA Sequencing-based diagnostic test for Borrelia burgdorferi, the infectious agent for Lyme disease and Borrelia miyamotoi, the infectious agent of a similar Lyme disease-like illness found recently in the United States."

http://www.dnalymetest.com/

Like@jbb, would welcome feedback on efficacy of these different test, your experience. JAH
 

JBB

Senior Member
Messages
188
From a LLMD about efficacy of tests here...typical the site has just gone down so the following link will take you to a different place. Luckily I copied most of the info as below (there was also a great video, this was yesterday!):
http://www.treatlyme.net/treat-lyme-book/how-to-diagnose-chronic-lyme-disease.html
http://www.treatlyme.net/treat-lyme-book/how-to-diagnose-chronic-lyme-disease.html
Using the IGenex method and interpretation standards the sensitivity and specificity of an IGM antibody western blot is 73% and 96% respectively and an IGG antibody western blot is 63% and 96%.

To increase the sensitivity of the tests many physicians such as myself will ignore the IGenex and CDC/IDSA standards and interpret a test as positive when only one or more of the following bands are positive 18, 23-25, 31, 34, 39, and 83-93. Many of us also will consider indeterminate findings at one of these bands as weakly positive.

A polymerase chain reaction (PCR) tests finds the genetic material (DNA) of the Lyme germ (borrelia) in whole blood. In a PCR test the DNA of a germ found in blood is amplified so that it can be seen. The test however has a sensitivity of nearly 30% when all studies are considered. Thus it is not that useful at finding a Lyme infection. However, when it is positive, the test really is most likely a true positive."

"Sensitivity" means the ability of the test to detect patients who have the disease, "specificity" means the ability of the test to exclude those who don't.

So using Western Blot at IgeneX 27% of Lyme will be missed?? But if you are totally negative then you can be pretty sure you don't have it? I don't like those statistics!!

From:
http://www.igenex.com/labtest.htm
Persistent/recurrent (chronic) infection is a unique diagnostic problem because the IgG response may be absent in more than 50% of the patients (11-13). Thus, in addition to the IgG Western blot, an IgM Western blot should be used. This technique has been helpful for some patients with persistent/recurrent disease (28,42). The physician must rule out possible cross-reactions from rheumatoid factor, other spirochetal and tick-borne diseases, and infectious mononucleosis (18,24). This can usually be accomplished during the differential diagnostic process. In addition, a recent study has indicated that the IgM Western blot may be as high as 96% specific, with almost a 93% predictive value of disease, if the patient has at least a 50% prior probability of Lyme disease (41).

Good "predictive value" then (chance test is correct). 50% prior probability??? What does that mean!?

I have sent IGeneX an email with various questions about their tests. No reply yet.



J
 
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15,786
"Using the IGenex method and interpretation standards the sensitivity and specificity of an IGM antibody western blot is 73% and 96% respectively and an IGG antibody western blot is 63% and 96%.
The infectolab test has 89.4% sensitivity (10.6% false negatives) and 98.7% specificity (1.3% false positives). That's when the threshold for a positive result is 3, so at 2 (which they typically use) there's probably fewer false negatives but a bit more false positives.

So the Infectolab Elispot-LTT results in a LOT less false negatives, and a bit less false positives than Western Blot.
 

JBB

Senior Member
Messages
188
Thanks @Valentijn. That is very useful, much appreciation. Can you clarify a few things for me please?

Are you talking about this combination of tests taken together?...

http://www.infectolab.de/index.php?id=47&L=1

Threshold is new to me. Is this the number of bands which are positive in the WB test? Isn't it pretty unlikely to get 3 positive lyme specific bands, or even two is pretty lucky?...or is this something else you are talking about. How does the LTT count in the threshold?


Best wishes,

J
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I have had the infectolab Elispot LTT and I don't understand it at all. Can anyone explain how it works, what they are testing and what the three values listed mean? my result was 1 1 1, which they say is negative, but my doctor doesn't agree that I don't have Lyme and said its not exactly negative, but I don't get it at all??
 

JBB

Senior Member
Messages
188
I have had the infectolab Elispot LTT and I don't understand it at all. Can anyone explain how it works, what they are testing and what the three values listed mean? my result was 1 1 1, which they say is negative, but my doctor doesn't agree that I don't have Lyme and said its not exactly negative, but I don't get it at all??

This is from a cached page from the website I tried to open earlier who are now apparently wanting a subscription to access the info...thanks google!!

http://webcache.googleusercontent.com/search?q=cache:gP4bnHUlo_4J:www.treatlyme.net/treat-lyme-book/a-review-of-lyme-infection-tests-pass-or-fail.html &cd=1&hl=en&ct=clnk&gl=uk&client=firefox-a

Elispot (iSpot): Grade C-

An elispot test identifies if immune system cells called T cells have been exposed to Lyme germs. In the United States the test is a newer test available as an iSpot through a lab called Pharmasan labs. It has been available in Europe for sometime currently through InfectoLab.

In an elispot T cells from a person with Lyme are exposed to certain antigens (protien complexes) found on the covering of a Lyme germ. When T cells are exposed to these antigens they release chemicals including gamma interferon. T cells in the test will only release gamma interferon if they have been exposed previously to the Lyme infection in the person being tested. There are false positive tests due to other causes of inflammation. Pharmasan has a technique to to take this into account before it reports a positive test.

The one advantage to this test is T cells become reactive to Lyme in about 2 weeks after an infection. The western blot may not turn positive for 4 or more weeks.

There is only one study that has been done looking at the iSpot. And it was performed by Pharmasan. So there is a bias for Pharmasan to find good results about its test. In the study 500 people were tested. People diagnosed with Lyme disease were in one group and people without Lyme were in another group (a control) group. In the study the iSpot had 84% sensitivity and 94% specificity. In the publication of the report there is not an indication of how many of the 500 people were in the control or disease groups. In addition, the standards used to determine those that had Lyme are not stated. In a recent call I asked one of the researchers about the standards to determine who was put into the Lyme disease group during the study and he noted those who were diagnosed with Lyme disease by 2 or more physicians who did not use any agreed upon standards.

The reason I raise the issues about the test design and reporting is that it cannot be replicated or verified based on other researchers. So it is hard to say if this test is really valid or accurate based on other research. In addition only 500 people were in the study, so it was too small of a study to determine if the results have any meaning in the real world where I see patients. By comparison the western blot has been studied by many. And I and other physicians have extensive experience using and interpreting it so we know how it behaves in the real world.

Grade: C-. Although this test has good sensitivity and specificity in one study, it is hard to say if in day to day use it will prove to be effective. However, it does provide another measurement of immune cell activity not addressed in a western blot. In addition, it can find Lyme infection earlier than a western blot.

One other reason I do not give it a higher result is insurance considers it experimental. Because of this insurance will not pay for the test. In addition insurance companies will not recognize it as a test that proves Lyme infection when making determinations about whether to cover IV antibiotics or other Lyme treatments. So I do not think it is worth the cost.

Not sure how long the cache will last but I have now copied the whole page to a word document if anyone can't access it PM me.


Best wishes,

J
 
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JBB

Senior Member
Messages
188
Aaah thanks @Valentijn. Wow, that's pretty impressive!

I'd be interested to know any details people have on how to interpret this Elispot-LTT test.

@justy KDM (I guess?) didn't agree that 111 was negative? Did he give any more details about how he was interpreting it or did he not agree based on clinical grounds?


Best wishes,

J
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Aaah thanks @Valentijn. Wow, that's pretty impressive!

I'd be interested to know any details people have on how to interpret this Elispot-LTT test.

@justy KDM (I guess?) didn't agree that 111 was negative!? Did he give any more details about how he was interpreting it or did he not agree based on clinical grounds?


Best wishes,

J
He didn't agree based on: symptoms and clinical picture, immune tests (SCD14 very high, but CD57 was not that low at 70, but in general he feels my immune system is very poor and perhaps not producing an immune response?) and the presence of Bartonella and Chlamydia Pneumonia which he felt were more common as co infections with Lyme, rather than on their own.

He is going to re test.
 

JBB

Senior Member
Messages
188
He didn't agree based on: symptoms and clinical picture, immune tests (SCD14 very high, but CD57 was not that low at 70, but in general he feels my immune system is very poor and perhaps not producing an immune response?) and the presence of Bartonella and Chlamydia Pneumonia which he felt were more common as co infections with Lyme, rather than on their own.

He is going to re test.

That argument seems pretty sound justy. I found this about CD57 - it can fluctuate. In video no.12 with KDM he says that he thinks the NK cells go into tissues to fight infection hence the low readings, not that we don't have them...guess this could be an explanation why there can be fluctuation.

http://www.lymediseaseaction.org.uk/latest-news/uk-usa-labs-in-talks/
All three parties (RIPL, IGeneX and LDA) agree that the CD57 test is not a useful diagnostic marker for Lyme disease. IGeneX studies have found that not only do normal, healthy people often have a low CD57, but that this level fluctuates.

Guess in context of other immune markers / extremely low results there must be some significance to a trained eye though.

Would you mind sharing any symptoms which were thought more Lyme specific as appose to ME? I have disappearing rashes on wrists / knees which seem to me more specific to Lyme in my mind - anything like that? Clinically I have had a tick bite when I was young and possibly many as my family had dogs which often got ticks.

What sort of stuff was he picking up on clinically?

Did he do anything prior to the tests such as antibiotics / biofilm breakers to increase reliability of the test results?


I found the following interesting on how Borellia can lie latent for years after the initial infection:


http://www.mesupport.co.uk/index.php?page=lyme-disease-borreliosis-m-e-in-the-uk
...Some people, however, may just develop the symptoms of this late stage without having or recognising an early stage. For example, some may only have mild early stage symptoms and just think it’s a cold or a bout of Flu, without realising what it really is. All too often the early stage, which is so much easier to treat, goes unrecognised and untreated, as some people do not get a rash or do not notice the tick bite.


http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1448627/
Lyme disease can be asymptomatic in its early stages and left untreated can develop chronic major manifestations.


Best wishes,

J
 
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justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I think he was picking up also on high inflammatory markers, and he felt I had brain inflammation, which was possibly backed up by tests. Other than that I just gave him a long, detailed history and a tick box questionnaire - he doesn't spend a lot of time discussing things so I don't know what he specifically thinks points to Lyme clinically other than the brain inflammation - but then Bart can cause that too.

I don't remember being bitten by a tick, but I grew up with dogs and had my own. What I do remember is cats and fleas a plenty (bart?) as well as spending a lot of time as a teenager and young adult in fields (misspent youth!) and also a nasty horse fly bite which swelled up for two years!! the horsefly bite cam just before my severe relapse after years of almost complete remission.

I have had a lot of psychiatric symptoms as well over the years - but that could be the Bartonella too. I do have some joint pain, but mainly small joints like fingers, knuckles, and ankles and I also now have weakly positive ANA - KDM says he sees this all the time in his Cpn patients.

I am starting Rifampicin (oral) for Bart soon and then some IVIG, then he will re test.
 
Messages
13
I want to get tested for this one too.

But I heard some people get tested a few times and it is negative and then finally they get a positive
Very complicated

Studying up.
 

JBB

Senior Member
Messages
188
@kevinj Yes it would appear that is the case. Also you can get back a result which is kind of borderline. Having said that my quote above suggests that from IGeneX around 73% of patients will be picked up by their western blot alone, add 30% CPR to that (looking for DNA of borellia) and you are looking at 80%...not sure about IFA from IGeneX, I was told that if this is positive they consider you +ve but there is some controversy over whether the test cross reacts.

If you are unsure on your first test there is a second test they do with antibiotic challenge looking for DNA in urine, it is on their site as a followup if your first test is negative. Don't know the stats for this one.

Same with LTT, difficult to tell how accurate it is as it is not "standard" if there is such a thing. Although what valentijn said is very impressive if that is truly an indicator. But...I wonder what the chances of getting 3's are, if they call 2 +ve the stats could be completely different.

I am trying to email the labs to get their stats on certain tests but finding it difficult to get an answer.


Best of luck,

J
 
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