Problems with current UK care for “tick sick” patients

Caudwell LymeCo conducted an online survey asking patients with Lyme and other tick borne diseases about their experience of state medical care in the UK. This post summarises some of the areas it highlighted, in which improvement is needed.

Please note that Caudwell LymeCo conducted this survey as an anonymous online questionnaire. We did not independently verify the accuracy of the individual responses. We report the aggregated findings of the survey as they were received and we cannot accept any liability for any misleading survey results.
1. Doctors don’t recognise the symptoms of Lyme disease

Lyme disease can be cured fairly easily if it is treated early enough. It is currently believed that sufficient antibiotic treatment within the first 6 weeks after infection can prevent chronic illness.

Unfortunately, many thousands of patients in the UK are not diagnosed in time, even after multiple visits to their GPs. Their infection then becomes a chronic debilitating illness, which is believed to be incurable in about a third of cases.

years to diagnosis
Number of years patients were ill before getting a Lyme disease diagnosis SOURCE: Caudwell Lyme Disease survey of 500 patients
2. Doctors often don’t test for Lyme or other tick borne diseases

Some patients are given a different diagnosis, and then no further testing is carried out. Our survey found, for example, that 34% of patients with confirmed Lyme disease have a diagnosis of Chronic Fatigue Syndrome according to their NHS doctor, and that 20% have a fibromyalgia diagnosis.

Caudwell LymeCo is concerned that these are diagnoses made subjectively on the basis of symptoms alone, whereas Lyme disease and other tick-borne diseases such as erlichiosis, bartonella, babesia and Q-fevercan be tested by serology, and should therefore be part of the initial screening process before a CFS or fibromyalgia diagnosis is made.

Lyme misdiagnoses
Commonest “alternative” diagnoses of Lyme disease patients by NHS doctors SOURCE: Caudwell Lyme Disease survey of 500 patients

We believe this happens because doctors are unawae of Lyme and other tick borne diseases, and simply don’t consider them.

3. The NHS diagnostic tests are unreliable

There is only one laboratory in England offering Lyme disease testing (RIPL at Porton Down) and one laboratory in Scotland. We want this monopoly to end, as we believe it is not in the interests of patients. Only 8% of patients tested for Lyme disease at this laboratory have a positive result for Lyme disease.

Independent assessments of the antibody test used by RIPL have found that it gets the correct result in only 57% of cases. At close to 50%, this means you are almost as likely to get the correct answer simply by asking any random stranger on the street to guess if you have Lyme disease or not!

assesment of Lyme test sensitivity

4. Most patients are denied ANY treatment

Our survey found that over 35% of patients are not prescribed any antibiotic treatment for Lyme disease.

weeks prescribed antibiotics

Many practitioners, and indeed the guidelines themselves,  advise against prescribing antibiotics for more than a few weeks, on the grounds that they have potential dangerous side effects. This cuts no ice with patients are are too ill to have a job or a social life and, in some cases, have been abandoned by their spouses or even parents. Living with untreated tick borne diseases is unbearable to the vast majority of patients.

Some of them people spend every penny they have on, for example, stem cell treatment, bee sting therapy (being injected with bee venom), hydrogen peroxide therapy (ingesting bleach), hyperthermia, and a huge variety of sometimes untested herbs from overseas. These patients do not resort to such therapies because they believe they will work better than prescription drugs: they turn to them because they are offered no alternative.

Doctors should only deny their patients regulated and monitored treatments, such as antibiotics, after evaluating the risk profile of the alternative treatments their patient will resort to, and weighing up which is the less risky option.

4. NHS resources are drained and patients’ lives are wasted

75% of Lyme disease sufferers are too ill to work at all. Our survey of 500 patients found that the average uncured Lyme disease patient costs the NHS more than the national average wage every year.

This is costing the taxpayer money by draining the NHS, as doctors dish out “firefighting” treatments to target the multitude of symptoms, instead of administering appropriate treatment of the root cause.

lyme patients work
The unemployment rate among UK Lyme disease patients SOURCE: Caudwell Lyme Disease survey of 500 patients
5. The problem is bigger than the government realises

Lyme disease is far from rare. We estimate that there are at least 45,000 new cases of Lyme disease in the UK every year and that only a tiny fraction of them are diagnosed and treated by the NHS.

The Caudwell adjusted data ONLY includes patients diagnosed privately, not those who remain undiagnosed
The Caudwell adjusted data ONLY includes patients diagnosed privately, whom we estimate are 10% of the total SOURCE: Caudwell Lyme Disease survey of 500 patients

This means that the total number of patients with Lyme disease keeps increasing dramatically each year. Data submitted to the World Health Organisation has identified that the number of Lyme disease cases throughout Europe has increased, on average, by 65% every year for the last 20 years.

Lyme disease growth

6. It is Not just one infection

Lyme disease is a bacterial infection which spreads throughout every organ of the body.

A survey by Caudwell Lyme Disease has found that over a third of Lyme disease patients, however, suffer from a variety of additional infections. Some of these are caught from a tick bite, whilst others are easily caught by people whose immune systems are weakened by multiple infections.

Caudwell LymeCo Co-infections survey 2016 Interim results

Caudwell Lyme Disease wants:
  1. PUBLIC AWARENESS
    We want every adult in Britain to recognise Lyme disease and co/infection symptoms easily.
  2. DOCTORS’ KNOWLEDGE
    We want every GP in Britain to know how to diagnose and treat this crippling disease, so that they will catch it early enough to completely cure it. We also want all relevant specialists to understand how Lyme disease and co-infections can affect each organ or system.
  3. BETTER DIAGNOSTIC TESTING
    We want NHS laboratories around the country to test for Lyme disease and co-infections, using a test which checks for ALL the different genomes of Lyme disease found in the UK.
  4. ADEQUATE TREATMENT
    Current guidelines and medical practice in the UK leave Lyme patients with little or no antibiotic therapy. We want all patients to be given adequate antibiotic therapy as well as other treatments if necessary.

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10 thoughts on “Problems with current UK care for “tick sick” patients

  1. Absolutely fantastic website and cause. I feel that there is a public awakening towards Lyme, and soon this will be a disease of the past.

    The data collected and the way it is presented provides the clarity needed to raise public awareness, and demonstrate the need for better testing at both an individual and state level.

    Have forwarded onto friends.

    Congrats!!!!!!

  2. As someone with an M.E. Diagnosis for 25 years with a wide range of serious health complications which could have been Lymes all along. I am very curious to see the outcome on more wider research on the accuracy of all the clinical testing available both privately ad NHS. Great resource thank you for dedication

  3. Hi excellent website. informative. We hope our 21 year old son with diagnosed schizophrenia will get a positive NHS test this time round (third test) in order to get the antibiotics he needs for Lymes disease.

  4. Brilliant detailed web site, but what chance does my 21 year old son stand if a £Billionaire cannot get any respite from this awful catastrophic situation…Nicky has been diagnosed with Lyme by Armin Schwarzbach of AONM Labs Armin Labs Germany. The NHS have their heads in the sand refusing to treat him other than Psychosis treatments…July 2018 is to long to wait for The NHS/PHE/NICE Guidelines to come into force…Nicky has had it (3) years now…Someone please help us, Nicky has some of the worst readings on record from Armin Labs.

    1. We are very sorry to hear of your story, yet another tragic case of Lyme patients being let down by the Health Service. We are doing all we can. We are not holding out hope for an improvement via the new NICE guidelines, but instead battling through other channels.

  5. There is a Harvard study from a few years ago (after 2008; early found searching a scientific database for the parasite), that showed a highly statistically significant number of ‘CFS’ patients had cryptostronglus pulmonii (c.pulmonii). The study itself criticizes its own detection methods & argues the incidence is even higher.
    This was found in my blood along with spirochetes, by dark field microscopy.
    It is hypothesized that the parasite can disrupt the Th1 immune response, and getting rid of it is key to the recovery of a healthy immune system. I’m writing to suggest adding it to possible coinfections/ refer yout to the Harvard study to ascertain if it links with Lyme; there may be further publications since I last looked/ had access .

    I know there are many possible co’s; just a suggestion to add to the 1000s you probably have….!

    And I know with standard testing, this is an issue, not with some newer tests; but ‘we’ test for malaria; we have a tropical diseases centre; we have freaked out about SARS, birdflu, swine flu, Ebola…… I don’t understand the focus on testing for UK strains of borrelia only. People travel. And not just for pleasure, for work, including diplomats & armed services personnel. The world is a small place now… I see this as another major failing by the NHS/ NICE/ government. Although when I was NHS tested, it was specifically stated under CFS guidelines: “do not test for Lyme disease unless the patient has travelled to a high risk area”. I was lucky the GP even took blood, although I’d been in NH, US. 3+ years earlier might have been better. Doubtful, but it would have alerted me! (of course my test was negative).

    BUT – Great work on the site. First chance I’ve had to really properly read through it all, not just quickly. I have a lot of optimism for this (gargantuan) endeavour. Well done V & John, thank you.

    Sometimes a platform and a voice is incredibly powerful & you have proven this. Please don’t stop. You have the backing of the UK Lyme community, as I’m sure you are very well aware! From personal acquaintances, I know people are watching from the US & Australia too (& probably, therefore, elsewhere). Already a wonderful achievement in a short period of time.

    Let’s hope results (which are not under your control – unfortunately) are also positive steps forward.

  6. Hello,
    I hope there will be resources towards developing a culture and pcr / immunoflorescent assay test in a UK based laboratory which would be able demonstrate ongoing infection. Once that can be done reliably there can be no arguments about on-going treatment…. Or at least then the arguments might be able to be resolved in a court of law rather than by the whim of an infectious diseases doctor.
    These methods (culture and pcr / immunoflorescent assay) already exist and are “gold standard” for many other infections. It’s frustrating they are not being used in the UK. Antibody tests will always have negative results in Lyme disease for a multitude of different reasons including the lack of immune response by the patient, the myriad of different species, co-infections and so on.
    Please help to demonstrate reliably ongoing infection in patients. When that is achieved a lot of the problems affecting patients regarding accessing long term antimicrobial treatment will potentially evaporate. It would provide patients and their GPs/specialists with clarity and evidence the doctors need to confidently prescribe and support.

    1. The trouble with pcr testing is that it has very low sensitivity, so you get too many false negatives. They do offer it at RIPL, but don’t consider it sensitive enough for diagnostic purposes.

  7. I was bitten in 1982 in North Wales ,(took no notice i was only 12 ) diagnosed 5 years ago with fibromyalgia, in the last 8 months have put it together and realised it is most defiantly, Chronic Lyme , no more questions wow just answers bizarre, been told so many times that it is in my head , i am in a battle with the NHS as we speak ! some days i wish to just give up , some days i want to prove myself , long battle ahead , im just so tired , and sick of not being believed.

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