Most accurate lyme test

[charles shepherd]

Could we have a discussion regarding which test is the most accurate test for lyme disease and coinfections?

Please share opinions and experiences

If you are in the UK, where you have the option of using NHS testing, or paying for quite expensive private tests (which also come with uncertainty over their reliability) this is the current info on Lyme Disease and Lyme Disease testing from the 2017 MEA purple book:

MEA position/information on Lyme Disease in the UK

Taken from the Differential Diagnosis of ME/CFS section of the MEA purple book:

Lyme disease

Doctors have been warned by the Medical Defence Union about the growing incidence of Lyme disease – an infection caused by Borrelia burgdorferi that is transmitted to humans by tick bites, although some people do not recall a bite taking place. Infected ticks are more common in woodland, heathland and moorland in areas, such as Exmoor, the Lake District, New Forest, Yorkshire moors and the Scottish Highlands.

The earliest symptom can be a slowly expanding localised erythematous rash (erythema migrans) that spreads out from the bite, usually after about 5-15 days. Other early symptoms can include lymphadenopathy and a flu-like illness. Laboratory evidence should always be sought if the diagnosis seems possible. When the disease is diagnosed early, treatment with antibiotics is often successful. Left untreated, Lyme disease can cause serious heart, joint and neurological complications.

Analysis of cerebrospinal fluid from cases of neurologic post treatment Lyme disease and ME/CFS has identified a range of proteins that appear to separate the two conditions (Schutzer et al 2011).

Misdiagnosis of Lyme disease

There are well-documented concerns about over-diagnosis and inappropriate management of Lyme disease. A retrospective case note study of 115 adults with suspected Lyme disease, who were referred to a UK infectious diseases clinic, found that only a minority had Lyme disease, one third had ME/CFS and no specific diagnosis was made in a further third (Cottle et al 2012). At least 53 unnecessary courses of antibiotics had been prescribed.

Lyme disease diagnostic services

The autumn 2009 issue of the Chief Medical Officer’s Update contained a warning about the accuracy of some of the private (i.e. non-NHS) tests for Lyme disease and about consequent dangers of misdiagnosis. The full statement can be found on the MEA website: http://www.meassociation.org.uk/2009/10/lyme-disease-and-mecfs/

As of 1 June 2012, the Lyme diagnostic service of Public Health England (formerly the Health Protection Agency) is provided by the Rare and Imported Pathogens Laboratory (RIPL), Public Health England, Porton Down.

Lyme disease is usually diagnosed by serology. RIPL uses a two-tier testing methodology. The screening test is a C6 antigen-based ELISA (combined IgG and IgM), followed by a confirmatory Western blot (separate IgG and IgM). PCR is also available and may be useful in testing joint fluid and biopsies of rashes. It has poor sensitivity on cerebrospinal fluid, and antibody detection is the preferred first line test on cerebrospinal fluid. PCR is not usually performed on blood as the duration of bacteraemia is short.

RIPL also has the capacity to perform further testing and tests for diseases related to Lyme. Contact RIPL to discuss if required.

RIPL clinical staff are available to discuss cases with medical professionals during working hours on 01980 612348 or by email referral to ripl@phe.gov.uk. There is no clinic at Public Health England, Porton Down, and they are unable to see patients or to give telephone advice directly to members of the public. Their website provides more information for health professionals and a (P2) form that can be downloaded to request a Lyme disease test. RIPL website: www.gov.uk/government/collections/rare-and-imported-pathogens-laboratory-ripl

The ME Association has a patient information leaflet on Lyme disease that is written by consultant microbiologist Dr Darrel Ho-Yen.

The American Centers for Disease Control and Prevention website has a list of frequently asked questions relating to Lyme disease: http://www.cdc.gov/lyme/faq/

Additional information:

1 New NHS initiative on Lyme disease: http://www.theguardian.com/society/...yme-disease-in-britain-spurs-ministers-to-act

2 It is worth noting that there are concerns about the reliability of some of the Lyme disease tests that are available in the commercial/private sector here in the UK as well as abroad.

So we have a situation where some people with genuine Lyme diseae may not be diagnosed by conventional NHS tests and then treated

And at the same time there are people being diagnosed as having Lyme disease with unvalidated commercial tests who are being treated with prolonged courses of antibiotics when they do not actually have Lyme Disease.

3 Also worth watching this news video on 'false positive' Lyme Disease testing, and the overlap between Lyme Disease symptoms and ME/CFS, if you are thinking of spending a lot of money on controversial tests and treatments in the private medical sector.

Video: http://globalnews.ca/video/2098060/explaining-the-mysteries-of-lyme-disease

Erythema migrans rash:

http://www1.toronto.ca/City Of Toronto/Toronto Public Health/Health Professionals/Lyme Disease/Files/Images/erythema_migrans.jpg


Dr Charles Shepherd
Hon Medical Adviser, MEA

 

[bombsh3ll]

It is worth noting that there are concerns about the reliability of some of the Lyme disease tests that are available in the commercial/private sector here in the UK as well as abroad.

So we have a situation where some people with genuine Lyme diseae may not be diagnosed by conventional NHS tests and then treated

That's just it. I think I will try and get a test on the NHS and if not, use one of the private services that also send specimens to the Rare and Imported Pathogens Laboratory (RIPL), Public Health England, Porton Down, so the NHS would have to accept a positive result from there. I just want to rule it out for peace of mind.

One of the reasons I have not as yet used a lab abroad is that even with a positive result from there, if you live in the UK you would still not get any NHS treatment.

 

[duncan]

If you are in the UK, where you have the option of using NHS testing, or paying for quite expensive private tests (which also come with uncertainty over their reliability) :

With the possible exception of a direct culture, ALL Lyme tests that I have ever heard of "come with uncertainty over their reliability", including those espoused by the NHS I believe.

When the disease is diagnosed early, treatment with antibiotics is often successful. Left untreated, Lyme disease can cause serious heart, joint and neurological complications.

I'm curious as to what @charles shepherd thinks the implications of these two observations are, e.g. greater chance for unsuccessful treatment?

Analysis of fluid from cases of neurologic post treatment Lyme disease and ME/CFS has identified a range of proteins that appear to separate the two conditions (Schutzer et al 2011).

I'm not sure that this demonstrates anything other than late stage Lyme is different than ME/CFS. All PTLDS arguably amounts to is a label for people who got sick, met the criteria for Lyme, were treated, and did not get well. Not only did they remain sick, they still met the diagnostic criteria - including serology - for Lyme. Isn't that just Lyme refractory to abx?

There are well-documented concerns about over-diagnosis and inappropriate management of Lyme disease.

There are also concerns about under-diagnosis.

Lyme disease is usually diagnosed by serology. RIPL uses a two-tier testing methodology. The screening test is a C6 antigen-based ELISA (combined IgG and IgM), followed by a confirmatory Western blot (separate IgG and IgM).

duncan:This is influenced by the CDC protocol, which has many detractors. But it brings some good benefits, one of which is the algorithm it embraced which essentially was built on probability, e.g. the more positive bands on a WB, the greater the likelihood a patient has Lyme (this is an oversimplification). I personally select a WB, also the C6, but I insist on finding which if any bands on the WB are positive and negative - just as I insist on knowing the C6 value. Merely being told you are positive or negative for Lyme doesn't provide the kind of insight a person might desire if the disease fails to resolve after conventional treatment.

 

[JT1024]

I used Igenex in the past. Has a good reputation as far as I know.

There is another test that is being used in the Big Data study at OMF/Stanford. It is the Lyme Nanotrap Antigen Test... link here: http://www.ceresnano.com/nanotrap-lyme-test

ILADS has a good document authored by Joseph Burrascano MD. It is from 2008 but there is still valuable information in it. Link here: http://www.ilads.org/lyme/B_guidelines_12_17_08.pdf

 

[zzz0r]

I have heard from many people in other groups about Armin labs in Europe. There are people that complain for not being diagnosed with Lyme and there are people that complain that have been diagnosed with lyme when they did not have lyme in the first place.

So I come to the conclusion that no safe point can be made.

Also I would also like to underline the significance of testing for coinfections also!

I mean is it enough to test just for lyme? Especially for people with false negatives there other coinfections thast present symptoms similar with Lyme and should be tested from those as well.

Now for people that get false positives I do not know what to think of that.

People should also try to figure out if they feel better after antibiotics treatment. If they do then there is something going on.

Also presence of parasites, viruses and pathogenic bacteria in the gut should not be disgarded!

 

[olegsel]

Hi
I wondered how specific the LTT analysis was. Found an article

The aim of this prospective study was to investigate the diagnostic performance of Borrelia (Bb)-induced interferon (IFN)-γ secretion detected by ELISPOT modified to be feasible for clinical laboratories as a supplementary test to the laboratory diagnosis of Lyme neuroborreliosis (LNB) in an endemic setting. Between 2002 and 2004, patients with symptoms of suspected clinical LNB were included in a study conducted on the Åland islands in the Finnish archipelago, which is a hyper-endemic area for Lyme borreliosis (LB). Fourteen patients with confirmed LNB and 103 patients with non-LNB were included, and the numbers of spontaneous and Bb-induced IFN-γ-secreting cells were assayed by the ELISPOT test. The ELISPOT assay showed a weak diagnostic performance with a sensitivity of 36% and a specificity of 82%. The findings in this study show that this ELISPOT-assay modified to be feasible in clinical routine laboratories is not useful as a supplementary diagnostic tool in the laboratory diagnosis of patients with clinically suspected LNB.

I wanted to prove or disprove the specificity of the LTT test for borreliosis
@Hip

 

[Valentijn]

I wondered how specific the LTT analysis was. Found an article

That article refers to a different test.

 

[Hip]

I wanted to prove or disprove the specificity of the LTT test for borreliosis

My understanding is that the problem with trying to validate any Borrelia test for sensitivity and specificity is that there is no gold standard to compare to. To get an accurate validation, you need a gold standard of testing, so that you can be completely sure whether a patient has Borrelia or not. Then you compare your test results to the gold standard results, and that way you can work out how accurate your test is (in terms of sensitivity and specificity).



Just a reminder:

Sensitivity is the percentage of people with the disease or infection who get a (correct) positive result when tested.

Specificity is the percentage of people without disease or infection who get a (correct) negative result when tested.

Ideally you want both the sensitivity and specificity to be 100%.

 

[olegsel]

http://forums.phoenixrising.me/index.php?threads/validity-of-elispot-ltt-lymes-test.35634/
I mean the percentage of cross reactions for this type of diagnosis ELISPOT (LTT)
@Jonathan Edwards

 

[TrixieStix]

I had a positive IgM western blot from Igenex and equivocal positive ELISA. This was followed up with a positive IgM western blot from a government-approved test from a local lab here in Australia.

From what I've seen anecdotally on local Lyme groups, plenty of people here have had negative results with both Igenex and Arminlabs.

I had the same results as you except I was positive on the standard government approved IFA test rather than the ELISA (both are used). Even with those results I do not believe I have ever been infected with Borrelia bacteria. I think it’s more likely in my case that some other condition (autoimmune) is causing false positives/cross reaction. It’s well established that autoimmune conditions can cause false positives on Lyme tests.

 

[Art Vandelay]

I had the same results as you except I was positive on the standard government approved IFA test rather than the ELISA (both are used). Even with those results I do not believe I have ever been infected with Borrelia bacteria. I think it’s more likely in my case that some other condition (autoimmune) is causing false positives/cross reaction. It’s well established that autoimmune conditions can cause false positives on Lyme tests.

Interesting, I had heard of that possibility. In my case, an academic who reviewed my results thought they could indicate that I have relapsing fever. That, combined with the observation that I experience a standard Herxheimer reaction after taking antibiotics leads me to think that relapsing fever is likely in my case.

 

[Thinktank]

I had the same results as you except I was positive on the standard government approved IFA test rather than the ELISA (both are used). Even with those results I do not believe I have ever been infected with Borrelia bacteria. I think it’s more likely in my case that some other condition (autoimmune) is causing false positives/cross reaction. It’s well established that autoimmune conditions can cause false positives on Lyme tests.

Yes, that's possible.
My girlfriend suffers from lupus (SLE), she just came out of a flare and was off all medications until she got misdiagnosed with lyme disease by a LLMD.
The LTT testresult was low positive, probably because of her underlying autoimmune disease. The Doctor then prescribed her a tough combo of antibiotics which are known to induce a flare in lupus patients and exactly that happened. The antibiotics for so called lyme sent her right back into lupus-hell, that was almost 3 years ago and she's still not back to normal.
Worst mistake ever. Be very careful with doctors who blame everything on lyme and are dismissive of autoimmune diseases.

 

[TrixieStix]

Yes, that's possible.
My girlfriend suffers from lupus (SLE), she just came out of a flare and was off all medications until she got misdiagnosed with lyme disease by a LLMD.
The LTT testresult was low positive, probably because of her underlying autoimmune disease. The Doctor then prescribed her a tough combo of antibiotics which are known to induce a flare in lupus patients and exactly that happened. The antibiotics for so called lyme sent her right back into lupus-hell, that was almost 3 years ago and she's still not back to normal.
Worst mistake ever. Be very careful with doctors who blame everything on lyme and are dismissive of autoimmune diseases.

I'm really sorry that happened to her.

 

[zzz0r]

Some doctors in Europe recommend the following combo for lyme testing from armin labs:

a. Borrelia Elispot
b.CD3/ CD57 cells
c. Borrelia IgG / IgM Seraspot

A.Do you agree? Has anyone had this combination of tests?

B.Also what is the difference between elispot and elisa?