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.
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.
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!
4. Most patients are denied ANY treatment
Our survey found that over 35% of patients are not prescribed any antibiotic treatment for Lyme disease.
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.
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.
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.
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 Lyme Disease wants:
- PUBLIC AWARENESS
We want every adult in Britain to recognise Lyme disease and co/infection symptoms easily.
- 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.
- 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.
- 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.