Confusion about Lyme diagnosis.

[JAH]

Anyone knows good doctors/clinics for Lyme in Europe? I found on net about BCA clinic in Germany, http://www.bca-clinic.de/ but some reviews said that is expensive, highly commercial and that after doing the treatment there and spending lots of money people do not feel better. So I really do not know where to try...

You could go to Herr Schwarzbach himself. I really don't know anything about this, except that in his video he mentioned seeing patients and it is on his website.
http://www.arminlabs.com/en/services/consultation

My understanding (just from googling) is that bca clinic is connected to Infectolab, which he broke off of, due to differences in the way testing is done.

YouTube video

Be curious as to your cd57 levels, all Lyme docs use that as a marker, good luck, J

 

[sorin]

My understanding (just from googling) is that bca clinic is connected to Infectolab, which he broke off of, due to differences in the way testing is done.

Do you know what the differences are? If I repeat the same tests at Infectolab is possible to get completely different results (positive EliSpot in one place and negative in the other)?

 

[sorin]

I'd be cautious with any alternative Lyme test if there is not evidence from blinded assessment that it's results are of some value. Some labs have been selling tests which tell people that they are positive for Lyme when there is no good evidence that this is truly the case. Good luck.

Hi! Are you referring to ArminLabs EliSpot tests? What could be strong proof that someone has Lyme?

 

[justy]

Does anyone ever get a negative result on this test?

Yes I did, but due to other immune and inflammatory markers, presence of co infections and symptoms I was diagnosed with Lyme clinically. Many ILADS Drs diagnose clinically as the testing is so generally poor. I believe Dr J in the states doesn't bother testing but treats on clinical picture and he has the best success rate arouns as far as I can tell.

My results show clearly a positive for Lyme even I do not think that I was ever bitten by a tick

Lots of people with lyme do not remember a tick bite or a bull's eye rash. Some ticks are a small as a poppy seed - if you had that on the back of a leg or the scalp for example you would never know, or see the bite. Tick bites don't hurt or itch so there is really no way of knowing. I don't remember being bitten AND my Elispot was negative but I accept my diagnosis.

Anyone knows good doctors/clinics for Lyme in Europe?

Professor Dr De Meirleir, Himmunitas clinic Brussels.

 

[Esther12]

Hi! Are you referring to ArminLabs EliSpot tests? What could be strong proof that someone has Lyme?

Sorry, I'm not familiar with ArminLabs, and a quick google didn't find any good evidence on the validity of their testing. It looked like there was some discussion here, but it didn't really get anywhere: http://forums.phoenixrising.me/index.php?threads/validity-of-elispot-ltt-lymes-test.35634/page-2

To me, it looks like they're an alternative lab and I wouldn't trust their results, but that is just my hunch at the moment.

None of the testing for Lyme is perfect, and even the mainstream testing can lead to people being wrongly classed as positive or negative (particular problems with false positive if people are being randomly tested in the population without and association with tick bites or bulls-eye rash; particular problems with false negative if people are tested early, first few weeks, in their illness), but with alternative testing it seems that a much higher percentage of those tested get positive results, without their being any evidence that these tests are any better at detecting Lyme infection. As these tests have not been validated in any sort of blinded assessment, and the only blinded assessment of them is an old which which found the test assessed was totally unreliable, I do not think that they should be sold to patients or used to make decisions about treatments.

 

[duncan]

@Esther12: "...particular problems with false positive if people are being randomly tested in the population without an association with tick bites or bulls-eye rash..."

Could you please expand on this observation and explain your logic?

 

[Esther12]

@Esther12: "...particular problems with false positive if people are being randomly tested in the population without an association with tick bites or bulls-eye rash..."

Could you please expand on this observation and explain your logic?

If people are being tested because they've been bitten by a tick/had a bullseye rash, then they will be part of a group more likely to have Lyme anyway, so the test leading to occasional false positives will lead to a lower percentage of false positives. If the test is applied to all of a population, without selecting on the basis of bullseye rash/tick bites, then there will be a much higher percentage of true negatives to receive a false positive.

Maybe I'm not explaining this clearly, but it's a general concern with testing/screening.

 

[duncan]

So it makes sense to you that the statistical accuracy of a Lyme test is swayed by geography - not the results, but the accuracy.

 

[Esther12]

So it makes sense to you that the statistical accuracy of a Lyme test is swayed by geography - not the results, but the accuracy.

I always mess up the statistical terminology that's meant to be used for these matters. For any less than perfect test, the % of those receiving inaccurate results will be affected by the population being tested.

 

[duncan]

I suck at stats.

You may wish to check out Lantos et al in Clinical Infect Dis November 2015 "Poor Positive Predictive Value of Lyme Disease Serologic Testing in an Area of Low Disease Incidence". See if that passes muster on an intuitive level.

Sorry for the diversion.

 

[Esther12]

I suck at stats.

You may wish to check out Lantos et al in Clinical Infect Dis November 2015 "Poor Positive Predictive Value of Lyme Disease Serologic Testing in an Area of Low Disease Incidence". See if that passes muster on an intuitive level.

I only read the abstract, but can see how if lots of patients were being tested for Lyme without good reason to think that they had Lyme, then if only 1% of those tested received a false positive, that could still mean that most of those with a positive result did not truly have Lyme. I've seen similar problems pointed to with screening for other illnesses. If testing for a rare condition is only slightly inaccurate, then if it's applied to a wide range of people it can end up doing more harm than good.

Personally, I think that some of the concerns about screening can be over-blown and influenced by a misguided paternalism. Many of the proposed harms could be mitigated if we were more open and honest from the get-go about the limits of any testing available - and that requires that it has been properly assessed under blinded conditions. So long as people are properly informed about what test results truly mean, a false-positive need not cause much concern. Having said that, there is also a financial cost that would need to be accounted for.

 

[msf]

Luckily that isn´t the case with the LTT-Elispot: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3474945/

 

[duncan]

It is also not the case with the 2T tandem, or the C6. Accuracy is not influenced by GPS.

Ruling out the validity of FDA approved Lyme tests on a scale of entire states, i.e. North Carolina, because of historic geographic prevalence, borders on....well, words escape me.

But this is where such logic can lead us.

These become theoretical and abstract arguments that fail the real-world acid test - the patients.

 

[msf]

Yes, the logic of that paper is horrible: we tested the sensitivity of the test by using it in an area where we knew that there was no Lyme.

Q. How did you know that there was no Lyme in the area?

A. Erm? Tradition?

 

[duncan]

I fear additional implications. What clinician in his right mind will now test for Lyme in that state - even though neighboring states have Lyme? What happens to the poor sob that is infected and can't get a proper diagnosis, and early stage Lyme slips inexorably into late stage?

 

[Esther12]

Those who have not been in an area where Lyme is spread as less likely to have Lyme than those who have. That's just something which needs to be acknowledge. I don't think that this means that testing is worthless in some states, but the danger of false positives when a condition is rare does illustrate the need for doctors and patients to be aware of testings limitations.

 

[duncan]

@Esther12 , that in theory is fine. But the reality is the accuracy of the 2T or C6 or whatever will not be influenced by location - only the results.

If the stated accuracy is 100%specificity and 99%sensitivity, then those values should hold true in Connecticut - and North Carolina.

And where ever, depending primarily on what species - and yes, strains - the tests are calibrated for.

 

[Esther12]

If it's shown to have 100% specificity under rigorous double-blind assessment, then that's right.

 

[msf]

The real problem of geography with regards to Lyme testing is that different areas have different strains.

http://cid.oxfordjournals.org/content/57/3/333.long

So US testing was only had 50% sensitivity for European cases of Lyme. Well, I´m sure the NHS will test for the two subspecies most common in Europe, Garinni and Afzelli...


According to RIPL at Porton Down they do (see Testing Practices at RIPL Porton Down):

http://www.hse.gov.uk/aboutus/meetings/committees/acdp/161012/acdp_99_p62.PDF


But according to the manufacturer of the test they use they don´t, they only test for Afzelli (and B.b sensu stricto).

http://www.viramed.de/en/test-methods/virastripe-immunoblot/borrelia-virastripe

Who to believe?

 

[IreneF]

Yes, the logic of that paper is horrible: we tested the sensitivity of the test by using it in an area where we knew that there was no Lyme.

Q. How did you know that there was no Lyme in the area?

A. Erm? Tradition?

Perhaps none of the right kind of ticks. Not all ticks harbor Lyme.