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Lyme disease: the BBC reports on experts who have the answers!

Chris Newton
Chris Newton
Research Director CIMMBER (Center forImmuno-Metabolism, MicrobiomeSee More

Those familiar with this site will note several previous articles on the roll-out of the 5G communications system. In one of these (‘The BBC: arbiter of reality!’) I commented on a BBC article entitled, ‘Does 5G pose health risks?’. This article was posted on their website by their ‘Reality Check Team’. Now I respond as Dr Chris Newton, Scientific Lead for Fight Lyme Now (a science-based lobby group for Lyme disease), to a recent BBC article on Lyme disease where again opinionated experts are quoted.

The strapline to the BBC article posted on the 10th of this month was ……The majority of people who believe they have a chronic form of Lyme disease are more likely to have chronic fatigue syndrome, experts suggest.

The article apparently uses sources within PHE and the NHS and quotes Dr Sarah Logan from London’s Hospital for Tropical Diseases, who suggested that:

“Most people who now think they may have had Lyme disease, in fact have a syndrome that is more in keeping with chronic fatigue syndrome.”

The article appears to target individuals who believe they have contracted Lyme disease and seek help outside the NHS. As someone familiar with the medical condition of individuals who apparently have Lyme disease, I will now present a counter argument in support of these patients.

When an individual first presents to a health professional, such as a GP (under the current UK system), information has to be gleaned within the short allotted time for the appointment. Bearing in mind that Lyme disease is a complex condition, where the symptom complex crosses-over with other conditions (including, chronic fatigue syndrome; see Schwarzbach, 2016), it is not easy to to give a definitive diagnosis on first interviewing the patient. The exception to this, is where the patient presents with the erythema migrans or bullseye rash, as presented in the caption of the BBC article.

So I have reason to believe that I have contracted Lyme disease and I present my condition to the NHS health professional. What is the most likely diagnosis?

To derive data on this, in late 2015, my colleagues and I established a survey to look at diagnosis, treatment and cost of Lyme disease in the UK. One of the first questions asked of individuals who suspected they had Lyme disease was, ‘When you first reported and/or presented your symptoms to the NHS, what INITIAL diagnosis were you given?‘ In response, the top 10 diagnoses were;

  1. 1) CFS
  2. Fibromyalgia (Fmy)
  3. Psychiatric disorder (Psy)
  4. ME
  5. Post Viral Infection Syndrome (PVIS)
  6. Irritable Bowel Syndrome (IBS)
  7. LYME DISEASE
  8. Sleep disorder
  9. Autoimmune condition (Au)
  10. Gastroesophageal Reflux Disease
The number of conditions diagnosed on initial presentation extended to 40 or more and these included rheumatoid arthritis, thyroid disorders, Alzheimer’s disease and multiple sclerosis.

From the survey data we next considered individuals who managed to convince their health professional to run a ‘Lyme disease test’. The NHS considers their Lyme test ‘highly accurate‘ (see BBC article), so how many individuals responding to the survey tested positive. At the time of presenting these data (Newton, 2017), 790 of 1120 survey respondents, were tested. Of these, blood from 220 individuals tested positive for antibodies to Borrelia. Further analysis revealed that only around 25% of these 220 individuals received a clinical diagnosis of Lyme disease at first presentation.

In total 93 individuals from the group of around 790 who were tested for antibodies to Borrelia, received an initial NHS clinical diagnosis of Lyme disease. By considering the number of test positive samples as a proportion of the 93 or so individuals who received a clinical diagnosis of Lyme disease (at first interview), the clinical sensitivity for the laboratory confirmation of Lyme disease in Scotland, England and Wales was around 63%. From the group of individuals who were given Lyme disease as an initial diagnosis, 12 were diagnosed in Scotland and of these, 11 tested positive (in Scotland). So the laboratory test sensitivity for Scotland was just over 90%. Subtracting these cases from the total (Scotland, England and Wales) gave a sensitivity for laboratory confirmation of Lyme disease in England and Wales of around 60%.

Drilling down a little further into the survey data, of the remaining individuals (around 75%) from the group who had a positive laboratory test (220), a range of diagnoses were given on initial presentation of their symptoms to an NHS health care professional (usually GP). For this group the most prevalent diagnoses were CFS followed by a Psychiatric disorder (Psy), PVIS, autoimmunity (Aut), Fibromyalgia (Fmy) and IBS. When test positive results were considered for each category of diagnosis for all individuals in the group of 790 (those who managed to get their blood tested for Borrelia antibodies), percentage positivity for each diagnostic group was; 19% (CFS, 45/233), 32% (Psy, 12/38), 38% (PVIS, 9/24), 15% (Aut, 7/47), 16% (Fmy, 7/45) and 41% (IBS, 5/12). Where no diagnosis was given, the sensitivity was 54% (27/50).

How do these data address the assertion that….. ‘Most people who now think they may have had Lyme disease, in fact have a syndrome that is more in keeping with chronic fatigue syndrome’.

Although not a scientific study, our survey represents the very population that Dr Sarah Logan is addressing, i.e. self diagnosed individuals who believe they have Lyme disease. It would appear from the survey that when first diagnosed, ‘most’ individuals have a condition other than Lyme disease but it is not true to say that most have CFS, as more than half were diagnosed with a condition other than CFS. Surprisingly or not, for those individuals where no diagnosis was given, the sensitivity approached that of the Lyme disease group (54% no diagnosis v. 63% Lyme).

Notwithstanding the lack of scientific rigour, these survey data agree with other studies for non-selected patients (non-clinically selected by health care professional or biomedical scientist) in that the sensitivity (quoted as accuracy in BBC article) of the NHS laboratory testing system was around 60% in England and Wales. This could mean that out of the 790 samples tested for Borrelia antibodies, as opposed to 220 positives, around 316 blood samples should have tested positive, this is a positivity rate of 40% (from a self-selected group) (see below for sensitivity with at least two tests).

In the context of our survey, the use of the word ‘most’ by Dr Logan is not appropriate. It undermines the high proportion of individuals with a positive NHS test result, (especially if you are one of the 96 (316-220), out of the 790 tested, who are told to ‘go and see a psychiatrist‘ as your result was negative (or indeed, even if it was positive-see survey statistics above). Also, what about the 330 out of 1100 respondents (29%) to the survey who ‘didn’t make the cut’ (no lab. test performed). Perhaps their powers of persuasion or their conviction was not up to muster (with respect to getting a test done)!

As the reader will note, this short article hasn’t begun to address the issue of tests performed by the NHS versus tests performed by the private sector. In my experience, individuals do not initially consider the NHS tests as ‘rubbish‘. Private testing is expensive and so the first approach (and I would advise) is to get testing done by the NHS. Often in desperation (many of these people are extremely unwell and have been this way for some time) individuals go to private clinics in the UK, Germany and sometimes the US. Often multiple tests are performed and overall test positivity is high.

Our survey shows that for around 500 individuals who could not get tested or for whom the test came back negative, 90% received a positive result from a private lab.

In terms of multiple tests or a combination of at least two tests, the paper by (Callister et al., 2016) is most important. Although it is not entirely clear what test is performed for Lyme disease (Borrelia antibody detection) in all the regional hospital laboratories (not all samples are sent to the PHE reference laboratory), the reference laboratory runs the C6 Elisa. The Callister paper shows that by combining the C6 Elisa with a test that measured IFNgamma secreted from activated T lymphocytes (those exposed to Borrelia antigens), sensitivity was increased from 59% for the C6 alone, to 83% for the C6 in combination with the T-cell test. This is a relatively large increase in sensitivity.

If the same protocol was applied to our group of self-reporting ‘Lyme patients’, the result could be that the overall picture changed to most individuals having a laboratory diagnosis of Lyme disease.

Most branches of science concern data. Words alone are not enough and articles on Lyme disease, where hypotheses (or even thoughts) are discussed, without presenting data (as in the case of the recent article on the BBC website), serve only to further the divide (antagonism) between the professional and the informed individual.

Long-term Lyme disease ‘actually chronic fatigue syndrome’ https://www.bbc.co.uk/news/health-49998344?fbclid=IwAR2_pdpHycbTEqMDK5pm2892RpC2E_6MomS1LJo3o2kRMhgoPeblRdLZBZY

Schwazbach A (2016) Personal communication

Callister SM, Jobe DA, Stuparic-StancicA, Miyamasu M, Boyle J, Dattwyler RJ, Paul M. Arnaboldi PM (2016). Detection of IFN-γ Secretion by T Cells Collected Before and After Successful Treatment of Early Lyme Disease. Clinical Infectious Diseases 62(10):1235–41

Note about the author: In 2015, Dr Chris Newton joined Dr Armin Schwazbach and Mr Demetrios Loukas to form the Lyme disease lobby group, Fight Lyme Now. Chris is an experienced biomedical scientist with academic interests in infection, inflammation and chronic disease. As will be apparent from some of his recent posts, he is not only passionate about biomedical science, he is interested in all areas of science, particularly those that impinge on the wellbeing of our global population (of all species).