What happens to the 6,000 undiagnosed Lyme patients?

How many patients go undiagnosed in the UK?

In the analytical research done by Caudwell LymeCo charity and Lyme Disease UK, to estimate the number of new Lyme disease patients in the UK each year, we concluded that the available data suggests a figure close to 45,000 people. Of these, how many are diagnosed and treated by their doctors, and how many go undiagnosed?

Patients can be diagnosed with Lyme disease by blood test, or by an erythema migrans rash. In our estimates, we looked at published research evaluating the reliability of the various tests used to diagnose Lyme disease in the UK. When we used these percentages of error to calculate the number of people who falsely received a negative blood test for Lyme disease, our result was 6,122.

Since this number is just an estimate, let’s round it down to 6,000. This would still be too many people to fit into London’s iconic concert venue, the Royal Albert Hall, and remember that there are an estimated 6,000 additional undiagnosed patients every year.


What happens to the 6,000?

Some of these patients may be diagnosed at a later date, after being given a “not Lyme” diagnosis initially. Some of them hear about Lyme disease and pay for a private test, if their doctor never mentions it to them, or refuses to order one on the NHS.

When Caudwell LymeCo and LDUK conducted a survey of 500 Lyme disease patients, we found that 69% of them had in fact had Lyme disease symptoms for at least two years before being diagnosed. Indeed, 29% of them had had Lyme symptoms for more than 10 years before being diagnosed.


A significant proportion of these patients had been diagnosed by private blood test. In some cases, they had been tested by the NHS or national reference laboratories and the result was negative – which puts them in our 6,000 false negatives – whilst in others their doctor had simply refused to order a Lyme disease test for them at all. Approximately one fifth of respondents had an NHS Lyme diagnosis recognised by their GP, whilst around four-fifths did not.

What diagnoses are the 6,000 given by their GP?

Logic suggests these patients will either be diagnosed with something else, or have no diagnosis at all. We asked survey respondents which other diagnoses they had according to their NHS doctor. In the case of some patients, these diagnoses were additional diagnoses to Lyme disease, or indeed complication of long term illness from Lyme infection. In other cases, these were alternative diagnoses or mis-diagnoses.

The graph below shows the numbers of patients given the commonest alternative or additional diagnoses.


We note that almost half of the patients were diagnosed with ME or Chronic Fatigue Syndrome, and a quarter were diagnosed with Fibromyalgia. These conditions – diagnosed by symptoms alone as there is no laboratory test for them – have many and varied symptoms with an almost complete overlap with Lyme disease symptoms. It is unusual for patients to be given a diagnosis of both CFS or ME and Lyme disease.

We were also interested to see that 14 of the survey respondents told us they had diagnoses of Multiple Sclerosis. Several of them wrote to tell us that they had made marked, or even spectacular, improvements in health after receiving antibiotic treatment for Lyme disease.

The other commonest alternative diagnoses – depression, anxiety disorder and irritable bowel syndrome – are so common amongst chronic Lyme disease patients that they can be considered symptoms of the illness. Other notable additional diagnoses mentioned in the survey, with a significantly higher frequency than they are found in the general population, included thyroid disorders, cardiac arrhythmias, Celiac disease and Ehlers-Danloss syndrome (joint hypermobility). The first three are described by doctors who specialise in treating patients with Lyme disease as being complications of the illness.

What treatment are the 6,000 given?

We can safely assume that the majority of the 6,000 undiagnosed new Lyme disease patients each year are not given appropriate antibiotic treatment. It is widely accepted that patients who are treated promptly stand the best chances of achieving total cure. Patients whose treatment is delayed, or who receive no treatment, are likely to develop long term complications.

We must assume that some of these patients are given diagnoses of Chronic Fatigue Syndrome and Fibromyalgia, and no other diagnosis. Both categories of patients are typically prescribed large amounts and varieties of pain-killing medication, antidepressants, and earlier generations of antidepressants which are used to modulate the pain response.

Additional therapies for Chronic Fatigue Syndrome and Fibromyalgia are typically cognitive behavioural therapy, in which patients are assisted by a psychologist in overcoming their perceived physical symptoms – which are assumed to have no physical cause – through retraining the ways their conscious mind operates. Fibromyalgia patients are sometimes referred to Pain Clinics, which take a psychological approach to helping them live with chronic pain. Both of these approaches aim to teach patients to live with their illness rather than to cure it.

We are interested to note that one of the two main conditions named in the NHS Choices page for pain management is arthritis, one of the best known symptoms of Lyme disease.

Patients diagnosed with Irritable Bowel Syndrome – another subjective diagnosis for which there is no objective diagnostic test – in the UK are generally offered no treatment at all and no further investigations for physical causes of their symptoms.

What are the long term implications for the 6,000?

Immune impairment

The most pervasive aspect of this long term illness is the impaired immune system. Research into the effects of Lyme disease upon the immune system is scant and scarcely total 20 papers, but the range of alterations found in patients with Lyme disease would have a considerable detrimental effect upon the patient’s ability to successfully fight off Lyme or any other infection, even something as mild as a cold. Taken as the most simplistic level, it stands to reason that the immune system will struggle harder to battle two infections than it would to combat just one.

Gut infections

In healthy people it is estimated that between 70% and 90% of the immune system work upon the gut, maintaining a healthy balance of bacteria and protecting the body from pathogens. It is little wonder that gut disturbances are one of the prevailing symptoms for the vast majority of Lyme patients with long-term untreated disease – partly because the immune system is harmfully altered, and partly because it is heavily concentrated fighting pockets of infection elsewhere.

Many long-term Lyme patients who undergo specialist testing turn out to have co-infections in the gastrointestinal tract which would normally be brief, acute infections but which, in their case, appear to be long-standing infections.

Pervasive inflammation

The chronically aroused yet also impaired immune system creates a situation of constant inflammation throughout the body. This exacerbates numerous symptoms which include headaches, muscle pains, joint pains and gastrointestinal disturbances.

Joint damage

Borrelia burgdorferi often accumulates in low-oxygen areas of the body, and areas which are difficult for the immune system to access. These include the synovial fluid within the joints, which have no direct blood supply, and the brain and spinal cord, which are shielded by the blood brain barrier. Over time, it erodes the cartilage in the joints, creates a situation of chronic pain.

Mental impairment and psychological symptoms

Lyme disease is well known to cause symptoms arising directly from its harmful effects on the brain which include forgetfulness, impaired short term memory, impaired mental reasoning and decision-making abilities often called “brain fog”, depression, severe anxiety, depersonalisation and sometimes acute psychosis.

Hormone disruption

Borrelia burgdorferi can attack any hormone producing organ in the body, and the commonest ones are the thyroid, ovaries, gonads, adrenal gland and pituitary. In our survey we found that 12% of respondents reported having thyroid disease. This corresponds with the proportion reported in various text books and by numerous doctors who treat Lyme patients.

What should be done?

Clearly the ideal answer would be to develop a far more reliable diagnostic test for Lyme disease.

In the meantime, an interim solution could be to train specialist doctors in recognition of Lyme disease by its symptoms, and encourage them to make Lyme disease diagnoses on this basis – in the same way that they currently diagnose Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome. An initial course of antibiotics could rapidly confirm or disprove a tentative diagnosis, because patients with Lyme disease rapidly experience a change in symptoms under treatment with the appropriate antibiotics whilst people without Lyme disease do not.

Featured Photograph: Wikimedia Commons