Lyme disease on BBC Today programme

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Robert 1973

Senior Member (Voting Rights)
BBC Radio 4 Today programme had an interview with a patient who has been diagnosed with Lyme disease (2h, 37m, 20s): http://www.bbc.co.uk/programmes/m0007bvr

According to the patient she had been unwell for 4.5 years before she was diagnosed with Lyme by a German doctor using tests which are not available on the NHS. As she had tested negative for Lyme using the two standard NHS tests, she was not able to receive treatment for Lyme on the NHS. She therefore paid for private treatment in Germany and the US which apparently included antibiotics, anti-virals and anti-malarial treatments. The patient said that the treatments had made “a massive difference”. She said she is now at a stage where she can live “a fairly normal-ish life most of the time” but she has to be very careful about her energy and there are times when the illness resurfaces and pulls her down for a bit.

The main reason for posting this is because I was surprised that the BBC chose to interview someone who was promoting private testing and treatments which are not approved by the NHS, without anyone being interviewed to explain why NICE and the NHS do not support these tests.

I have very limited knowledge of Lyme and the reliability of different types of testing but I have always been advised by UK physicians not to pay for private Lyme testing, so it struck me as unbalanced and irresponsible for those views not to be represented. (I was also struck by the contrast with the approach that the Today Programme has taken towards ME, where patients’ views and experiences seem to be either largely ignored or treated with contempt.)

Please note, I am not criticising the patient who was interviewed in any way. I am very pleased that her health has improved and I wish her well.


Public Health England’s advice on Lyme disease testing: https://www.gov.uk/guidance/lyme-disease-sample-testing-advice
 
I didn't listen to the programme. Based on your description I share your concerns. There will be patients who will go to "Lyme doctors" abroud because of this. They will spend a lot of money and energy and take the risks of treatments which are not proven.

(I was diagnosed with chronic Lyme and treated by Lyme-doctors in Germany where I come from. I don't recommend it.)
 
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The patient said that the treatments had made “a massive difference”. She said she is now at a stage where she can live “a fairly normal-ish life most of the time” but she has to be very careful about her energy and there are times when the illness resurfaces and pulls her down for a bit.

Then clearly she hasn't been cured. She still has the illness.

Confirmation bias after spending all that money?
Temporary improvement of symptoms that aren't related to the treatment?
Who knows?
 
A friend with Lyme sent me this edifying link the other day: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872223/

The collusion between a medical group and insurance companies was news to me (in the body of the paper).

1 million people are predicted to get infected with Lyme disease in the USA in 2018. Given the same incidence rate of Lyme disease in Europe as in the USA, then 2.4 million people will get infected with Lyme disease in Europe in 2018. In the USA by 2050, 55.7 million people (12% of the population) will have been infected with Lyme disease. In Europe by 2050, 134.9 million people (17% of the population) will have been infected with Lyme disease. Most of these infections will, unfortunately, become chronic. The estimated treatment cost for acute and chronic Lyme disease for 2018 for the USA is somewhere between 4.8 billion USD and 9.6 billion USD and for Europe somewhere between 10.1 billion EUR and 20.1 billion EUR. If governments do not finance IV treatment with antibiotics for chronic Lyme disease, then the estimated government cost for chronic Lyme disease for 2018 for the USA is 10.1 billion USD and in Europe 20.1 billion EUR. If governments in the USA and Europe want to minimize future costs and maximize future revenues, then they should pay for IV antibiotic treatment up to a year even if the estimated cure rate is as low as 25%. The cost for governments of having chronic Lyme patients sick in perpetuity is very large.
 
I don't know much about the Lyme topic but one thing I find absurd is that the medical dogma is that it's not a big deal as long as there is prompt treatment soon after infection but the whole system is built to make that impossible, almost guaranteeing that a large percentage of people infected with the bacteria will never get treatment, by a combination of unreliable tests, low research funding, "Lyme doesn't exist around here", the bullseye rash only being found in, what, about half or patients, and complete apathy to the symptoms themselves making diagnosis difficult without the bullseye rash that not everyone gets.

Circular illogic. Makes as much sense as a city not being interested in funding a fire department since as long as fires are put out quickly, obviously by a competent and well-staffed fire department, then they aren't really a big problem.

Someone should really explore persistent myths within medicine. There's an awful lot of them.
 
ScottTriGuy said:
A friend with Lyme sent me this edifying link the other day: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5872223/

The collusion between a medical group and insurance companies was news to me (in the body of the paper).

1 million people are predicted to get infected with Lyme disease in the USA in 2018. Given the same incidence rate of Lyme disease in Europe as in the USA, then 2.4 million people will get infected with Lyme disease in Europe in 2018. In the USA by 2050, 55.7 million people (12% of the population) will have been infected with Lyme disease. In Europe by 2050, 134.9 million people (17% of the population) will have been infected with Lyme disease. Most of these infections will, unfortunately, become chronic. The estimated treatment cost for acute and chronic Lyme disease for 2018 for the USA is somewhere between 4.8 billion USD and 9.6 billion USD and for Europe somewhere between 10.1 billion EUR and 20.1 billion EUR. If governments do not finance IV treatment with antibiotics for chronic Lyme disease, then the estimated government cost for chronic Lyme disease for 2018 for the USA is 10.1 billion USD and in Europe 20.1 billion EUR. If governments in the USA and Europe want to minimize future costs and maximize future revenues, then they should pay for IV antibiotic treatment up to a year even if the estimated cure rate is as low as 25%. The cost for governments of having chronic Lyme patients sick in perpetuity is very large.
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Hmm... that paper is making some rather strong claims.

In the USA by 2050, 55.7 million people (12% of the population) will have been infected with Lyme disease. In Europe by 2050, 134.9 million people (17% of the population) will have been infected with Lyme disease. Most of these infections will, unfortunately, become chronic.
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That sounds exciting. Don't see much evidence to support it. Smells like BS to me.
 
Lyme disease was back on BBC R4’s Today Programme this morning. Much more balanced discussion this time. Starts at 1h 49m 54s: https://www.bbc.co.uk/sounds/play/m0007k5f

Two interviewees:

1) Dr Saul Faust, Head of Lyme Disease Guideline Committee at NICE.

He agreed that the NHS antibody tests are not perfect. German T cell tests are notoriously difficult to interpret and give a lot of false positive results. The T cell test has “never been validated across multiple laboratories in clinical trials ... the European Society for Microbiology has stated that these cellular test should not be used until they have been adequately assessed.”

Many people who think they have Lyme disease don’t actually have it.

2) John Caudwell, Phones4U billionaire who was diagnosed with Lyme using the T cell test, and has since founded the Caudwell LymeCo Charity: https://caudwelllyme.com/

He said that we don’t know how reliable the German T cell tests are because there hasn’t been enough research. “What we know for certain is that the NHS test produces false negatives.”

He suggested that people with ME, fibromyalgia and CFS May have Lyme disease.

He is not calling for the T cell test to be used in the UK at this stage but emphasised the need for research to “make sure that we can diagnose Lyme disease effectively. I believe there’s ten of thousands more people suffering from Lyme disease and suffering devastating consequences who are not diagnosed.”

“This is dreadful state of affairs because we’re not just talking about people with mild symptoms, we’re talking about people whose lives are completely and utterly destroyed.”


From what I understand, it seems highly likely that if there are people in the UK with undiagnosed Lyme – which Dr Faust appeared to concede that there must be due to the number of false negative produced by the NHS antibody tests – then at least some of those people will be diagnosed with ME and/or CFS.

It would be interesting to use the UK Biobank to see if people diagnosed with ME/CFS have a statistically significant higher probability than health controls* of testing positive for Lyme using the T cell test.

I see that last year Caudwell pledged to invest £1million of his own money into Lyme disease research: https://www.bbc.co.uk/news/av/44603420/john-caudwell-offers-over-1m-for-lyme-disease-research

I am minded to write to Caudwell – it could be useful to have a billionaire taking an interest in ME/CFS research.

[*edit - added “than healthy controls” for clarity.]
 
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Robert 1973 said:
It would be interesting to use the UK Biobank to see if people diagnosed with ME/CFS have a statistically significant higher probability of testing positive for Lyme using the T cell test.

I see that last year he pledged to invest £1million of his own money into Lyme disease research: https://www.bbc.co.uk/news/av/44603420/john-caudwell-offers-over-1m-for-lyme-disease-research

I am minded to write to Caudwell – it could be useful to have a billionaire taking an interest in ME/CFS research.
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My input on this has been from my cousin, who was a service infectious disease consultant in the UK who sadly died of pancreatic cancer last year at an early age. She said that she saw hundreds of people with ME/CFS symptoms in her clinics and essentially none of them came out positive on Lyme tests. She routinely treated people with recent Lyme infection but was not convinced about cases of long term illness being due to continued infection.

People with positive Lyme serology may well have been excluded from the Biobank cohort but if not I bet there are hardly any positive anyway.

Caudwell's talk sounds ridiculous.
"I believe there’s ten of thousands more people suffering from Lyme disease and suffering devastating consequences who are not diagnosed.”

Why does he believe that if nobody has any evidence?
The NHS test may produce false negatives early on but if it is done again it should show positive if there is ongoing infection. Maybe a few real cases show no result but how would we know?

The German test sounds likely to be highly unreliable. T cell based Elispot type tests are extremely unreliable because you can easily get different results by shifting the calibration a bit. And since nobody has a gold standard nobody knows where to put the calibration.

It seems to me likely that Caudwell is helping nobody, least of all his family.
 
the one thing that I recall from the interview was that at one point Caudwell seemed on the point of saying something interesting... so the interviewer interrupted and cut him off. I suppose its fair enough. If they are to be paid all that money people will want to hear their voices.
 
Jonathan Edwards said:
She said that she saw hundreds of people with ME/CFS symptoms in her clinics and essentially none of them came out positive on Lyme test
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Essentially? The ELISA is notoriously suspect diagnostically.

Jonathan Edwards said:
She routinely treated people with recent Lyme infection but was not convinced about cases of long term illness being due to continued infection.
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If she was limited to acute Bb then she would by definition not be familiar with late stage Lyme. It's when it progresses to late stage that many of the long term issues manifest, both in terms of diagnostics and treatment.

Jonathan Edwards said:
Why does he believe that if nobody has any evidence?
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Circular logic. The NHS and CDC both endorse diagnostics that they use, repeatedly, to prove how good those same diagnostics are, as well as how poor everybody else's are.

Jonathan Edwards said:
The NHS test may produce false negatives early on but if it is done again it should show positive if there is ongoing infection.
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Maybe. Maybe not. Lots of variables to unpack, from antigenic variation to abx abrogating immune responses to testing for the wrong strain/species to lack of antibody response etc.

Jonathan Edwards said:
And since nobody has a gold standard nobody knows where to put the calibration.
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Yes.
 
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Jonathan Edwards said:
The NHS test may produce false negatives early on but if it is done again it should show positive if there is ongoing infection. Maybe a few real cases show no result but how would we know?
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I tested negative for Lyme on the NHS in 1992 when I was first unwell. As far as I’m aware I have never been tested again. I assume that is not unusual.

I’m also not sure how we can accurately determine the probability of the NHS antibody tests producing false negatives unless we have some other means of determining whether or not someone has Lyme disease.

If in properly conducted clinical trials people diagnosed with ME/CFS (who test negative with the NHS antibody tests) were found to be significantly more likely than healthy controls* to test positive for Lyme using the German test, that would tell us something useful. And if they didn’t then it would be good evidence that people diagnosed with ME/CFS should not be wasting their money on private Lyme tests and treatments.

Jonathan Edwards said:
The German test sounds likely to be highly unreliable. T cell based Elispot type tests are extremely unreliable because you can easily get different results by shifting the calibration a bit. And since nobody has a gold standard nobody knows where to put the calibration.

It seems to me likely that Caudwell is helping nobody, least of all his family.
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I’m not sure I follow your logic. Caudwell is pledging to fund, and calling for, research to develop more reliable tests for Lyme disease. I’m struggling to understand why that would not be helpful. As far as I’m aware, he isn’t advocating for any tests to be used in the NHS unless they have been adequately assessed and validated in clinical trials.

[*Edit – added “than health controls”, for clarity]
 
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Robert 1973 said:
I’m also not sure how we can accurately determine the probability of the NHS antibody tests producing false negatives unless we have some other means of determining whether or not someone has Lyme disease.
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I agree with most of that you have written, @Robert 1973 , but I just wanted to address this part of your post. This false negative being alluded to is, if I am interpreting correctly, associated with testing too early. Humans as a rule fail to produce antibodies to Bb for the first 30 days or so after being bitten. You might see a tick clinging to your skin, go get tested immediately, and produce a negative antibody result - even though you could be harboring a very serious Lyme infection.

There are additional issues, of course, but this one, early on at least, resides in our immune systems. We would need a direct antigen test, imo, to resolve this. This IS available for the bulls-eye rash, but outside of that it doesn't happen very often.
 
Robert 1973 said:
I tested negative for Lyme on the NHS in 1992 when I was first unwell.
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I suspect you had been ill for several weeks at least. In that situation there is probably not much point in re-testing.


Robert 1973 said:
I’m also not sure how we can accurately determine the probability of the NHS antibody tests producing false negatives unless we have some other means of determining whether or not someone has Lyme disease.
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Yes, but one has to consider the likelihood that the clinical picture of ME/CFS is going to be due to a chronic infection. From my understanding of infectious disease the chances are pretty much zero. No rise in CRP, no localising signs... etc When do we start worrying about a test giving false negatives for being trampled by unicorns?

Robert 1973 said:
If in properly conducted clinical trials people diagnosed with ME/CFS (who test negative with the NHS antibody tests) were found to be significantly more likely to test positive for Lyme using the German test, that would tell us something useful.
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Yes, but the company has had ample time to do this obvious study and has not. Which to me is a fairly clear indication that they are not interested in any scientific validity for their test, just selling it. I had a vague memory someone had actually done this but probably not.

Robert 1973 said:
I’m not sure I follow your logic. Caudwell is pledging to fund, and calling for, research to develop more reliable tests for Lyme disease. I’m struggling to understand why that would not be helpful.
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Because no doubt commercial interests will lap up his cash and generate further red herrings.

The logic of my original comment was that if Lyme was really responsible for a meaningful number of cases diagnosed as ME/CFS then the NHS test would have shown up on at least a good number of them. The fact that there may be false negatives does not mean that the test does not pick up a reasonable number of positives.

The Lyme story keeps raising its head but if there was really something to it the German test people would realise that and do the obvious studies and rake in millions. The fact that the studies have not been done speaks volumes.
 
Jonathan Edwards said:
The logic of my original comment was that if Lyme was really responsible for a meaningful number of cases diagnosed as ME/CFS then the NHS test would have shown up on at least a good number of them.
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That would not hold true necessarily in the US. I cannot speak for the UK - personally I am a fan of the C6, but too many question the voracity of the highly conserved protein claim. I think a good measure would be multiple tests over a measured period of time. If the symptoms suggest Bb involvement, I'd want a abx challenge as well; I'm not sure why this hasn't become SOP, to be quite honest.

There are simply too many question marks to accept anything at face value.
 
Jonathan Edwards said:
Yes, but one has to consider the likelihood that the clinical picture of ME/CFS is going to be due to a chronic infection. From my understanding of infectious disease the chances are pretty much zero. No rise in CRP, no localising signs... etc When do we start worrying about a test giving false negatives for being trampled by unicorns?
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https://globallymealliance.org/news/can-biomarkers-be-used-to-diagnose-stages-of-lyme-disease/

Some interesting observations on CRP in Lyme. Early stage with EM raised, later with neuro symptoms not raised, nor among those with anti biotic responsive arthritis (unclear from text as to post or pre treatment) but raised in post treatment Lyme syndrome and among those with antibiotic refractory arthritis.

PLS and antibiotic refractory arthritis with high CRP might suggest an immune mechanism, and such phenomena are explicitly proposed by some German labs for some patients.
Early stage with EM and raised CRP - more classic infection response.
Neuro symptoms but normal CRP-????- empirical abx course might be a good idea as is recognised for some cases in such journals as Aertzteblatt which is somewhat sceptical of many newer lab tests and no advocate of "Lyme for everyone".
Abx responsive arthritis with normal CRP suggests organism acting in varierty of pathological ways without invoking CRP.

Lyme may be one kind of infection which defies usual patterns as to CRP level. Perhaps some ME patients will indeed have ongoing infections which also defy normal patterns. It cannot be excluded.
 
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NelliePledge said:
Which given how shallow the beeb health reporting is may be sufficient to influence a change of attitude?
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Definitely.

Also while the chronic nature is contested, the vector of transmission is rather common and can happen to anyone, even to themselves; and that makes it way more important. Especially for anyone who understands that although the common knowledge is that it's fine if it's diagnosed and treated promptly, there is no guarantee that this is what will happen and in fact the system is set up in a way that makes it harder than it should be.

It's really weird how this disease is perceived. There was a thread on YouShouldKnow Reddit saying chronic lyme is definitely not a thing, but many comments emphasising that post-treatment lyme is definitely a thing. Which is entirely down to perception and not anything relevant.

So silly that medicine is still failing millions because of words. Just basic usage of words, some stripped of all meaning, some with arbitrary meanings stacked on. A common vocabulary is the basis of any domain of knowledge and yet this is most important domain of knowledge, one working with life and death, is still arguing over the basic meaning of common words, in large part because some jackasses are allowed to completely change that meaning to fit their purpose.

But then you realize that people routinely die from routine surgeries because many surgeons are too damned narcissistic to use basic tools like a freaking checklist and somehow everything makes sense while at the same time making no sense at all.

Somewhere, a joke goes: medicine... the aristocrats!
 
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