Validity of Elispot LTT Lymes Test

[MEMum]

OK, thanks for your help - I'll do that .....

Hi
Just to say that the Prof said on another thread that he was going to be birdwatching in Oman on Monday when James Coyne? was going to be speaking in Edinburgh so don't worry if he doesn't reply for a while.

 

[Davidcox257]

Ok thanks for letting me know

 

[Hermes]

the

I think your UK specialist is right to be sceptical. Tests like this require validation not just on acute infection cases but in the context of chronic disease. And that is extremely tricky if there is no reliable gold standard of culturing the organism. Tests of this sort took at least ten years to be reliably validated for TB. As far as I know the LTT Elispot is still at the early research stage. In simple terms, if a test like this is not confirmed by cross-laboratory blinded quality control exercises, it would not be considered by most physicians as reliable enough to use in clinical practice.

This may not give you 'reassurance' but what I think you want is an honest answer and my answer would be that I doubt that this test is well enough validated to use for treating people.

The reliable gold standards accepted in Britain have proven to be unreliable and inaccurate. Meanwhile patients suffer and die, while doctors dispute so called 'gold standards' and validation which never occurs. Doctors remain stuck in a muddle while patients die, quite a familiar story.. Please read www.me-ireland.com/diag/lyme.htm

 

[Jonathan Edwards]

the


The reliable gold standards accepted in Britain have proven to be unreliable and inaccurate. Meanwhile patients suffer and die, while doctors dispute so called 'gold standards' and validation which never occurs. Doctors remain stuck in a muddle while patients die, quite a familiar story.. Please read www.me-ireland.com/diag/lyme.htm

No Doctors are stuck in the middle. All they need to do is to verify their practices and publish them. I am not aware of anyone dying in this context from lack of treatment. I have never been involved in this field and I see it now as a disinterested bystander. What I see is irresponsible doctors making money out of patients without adequately testing what they are doing. That sort of practice was common in all specialties in the 1970s but we learnt to take a more responsible approach in the 1990s. The people actually involved in treating patients cannot complain that there are no standards - they should be setting them. They ahve as much responsibility as anyone else.

 

[duncan]

People are dying, though, from undiagnosed Lyme, and by extension, lack of treatment.

Examples would be individuals who died suddenly and were later autopsied only to discover they suffered from cardiomyopathies caused by Lyme. There was a much publicized cluster of similar cases in the US back in 2014, I think.

No way of knowing how many cases are missed since performing such autopsies is not the norm.

 

[Jonathan Edwards]

People are dying, though, from undiagnosed Lyme, and by extension, lack of treatment.

Examples would be individuals who died suddenly and were later autopsied only to discover they suffered from cardiomyopathies caused by Lyme. There was a much publicized cluster of similar cases in the US back in 2014, I think.

No way of knowing how many cases are missed since performing such autopsies is not the norm.

Did any of those cases have false negative Lyme tests prior to death? If not I cannot see what it has to do with opinions on reliabilities of tests. If there was no prior reason for a doctor to consider the diagnosis then I am not sure what anybody can do about it, unless we are going to test everyone for Lyme on a weekly basis just to be sure - and as far as we know the usual tests would do fine for these cases?

 

[duncan]

I should imagine it has a lot to do with the reliability of tests. Also, with the dangerously dubious tagline that Lyme is hard to get, easy to cure.

If people were aware of the true nature and degree of risk associated with any TBD, certainly with Lyme, maybe regular testing would become more of a routine. Then - maybe - the outcry against the inadequacy of current testing technologies and schemes, e.g. the CDC's 2T mechanism, would ratchet up in intensity.

As to whether there were any reasons for doctors to consider a Lyme diagnosis - I don't recall. But I will tell you this: If I had a patient in a Lyme endemic area...or in any area that was known to be a habitat of ticks, Lyme would frequently be on my list of differential diagnoses if any of the common symptoms presented.

Unfortunately, many believe "the usual tests" do far less than "fine".

Hence the effort to develop better tests...

 

[Cheesus]

No, I personally suspect that a subset of ME is likely to be due to the sort of non-specific T cell overreactivity you see in Reiter's syndrome. That is not autoimmunity because the overreactivity is non-specific - not directed against a specific host antigen as far we know.

Could that explain why N-acetyl-cysteine, a T-cell agonist, made me horrendously ill? It directly exacerbated all my usual central sensitivity symptoms in the most excruciating way. It took me 6 weeks to recover from two doses.

 

[Hermes]

No Doctors are stuck in the middle. All they need to do is to verify their practices and publish them. I am not aware of anyone dying in this context from lack of treatment. I have never been involved in this field and I see it now as a disinterested bystander. What I see is irresponsible doctors making money out of patients without adequately testing what they are doing. That sort of practice was common in all specialties in the 1970s but we learnt to take a more responsible approach in the 1990s. The people actually involved in treating patients cannot complain that there are no standards - they should be setting them. They ahve as much responsibility as anyone else.

I disagree. Many doctors in Britain and Ireland and other countries dismiss undiagnosed lyme patients as psychiatric cases. Or give a diagnosis of ME or CFS with no objective evidence to confirm or deny.Thus they remain undiagnosed. This has been strongly encouraged by wessely school doctors and psychiatrists and those under their influence eg. Medical Council, MRC, NHS. Furthermore, the Elisa and Western blot tests are inaccurate, please read www.me-ireland.com/diag/lyme.htm .Thus patients are presented with considerable obstacles and doctors are left in a muddle. Clear direction is required in the form of highly accurate tests, foreign based at present, to identify chronic lyme disease and co-infections. The responsibility rests with the Medical Council, NHS and Dept of Health. This responsibility may need to be enforced via court cases, including class actions suits. I see that the billionaire Mr. Caudwell's family has lyme disease, and he is being advised to pursue legal actions.
By the way, Lyme patients have died of the illness and its complications, one prominent factor being Lyme Carditis.