Lyme Disease UK provides patient support and advice
Lyme Disease Facts and Stats
A selection of quick Lyme disease facts and stats.
Lyme disease is caused by a spirochete – a corkscrew-shaped bacteria called Borrelia.
In 1993, Lyme disease was described by Oxford scientists as a danger to the public.
A leading Lyme disease specialist has described the illness as ‘the AIDS of our time’.
Borrelia is thought to be the most complex bacteria known to man. Syphilis, another spirochetal illness, has been dubbed Borrelia’s ‘dumb cousin’.
Borrelia is transmitted through the bite of an infected tick. There is mounting evidence to suggest that the illness may be caught from other vectors or biting insects.
Lyme disease is the most common human tick-borne infectious disease in the northern hemisphere and there are numerous strains of Borrelia.
Infected ticks have been found all over the UK in woodland, open countryside and even urban parks and gardens.
Data gathered by 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.
As Lyme disease is not a notifiable disease in this country, the true number of new cases per year is unknown. This means that there is a vast discrepancy in estimates. There are around 1,000 serologically confirmed cases in the UK each year. Public Health England state that the true number could be around 3,000 per year. However, Caudwell Lyme Disease estimates that the figure could be far higher and closer to 45,000 cases per year.
Lyme infection can occur at any time of the year. Ticks are more active in the spring and summer months but temperatures need to drop below freezing to reduce tick activity.
The Big Tick Project 2016 found that one third of dogs checked in their study had ticks attached. Pet owners are at risk as ticks can drop off in the home or transfer.
Lyme disease is known as the ‘Great Imitator’ as symptoms are nonspecific and can mimic so many other conditions. Lyme disease can look like ME/CFS, fibromyalgia, anxiety, depression, Alzheimer’s, Parkinson’s and ALS. When it comes to Lyme disease, the chance of misdiagnosis is high.
Lyme disease can be passed on congenitally from an infected mother to her baby.
Lyme disease may be sexually transmitted, but more research is needed to confirm this. You cannot catch Lyme disease through normal social contact with infected people. More research is desperately needed into other modes of transmission, for example via the blood supply and organ donation.
Lyme disease can cause a bull’s-eye rash. The rash is diagnostic of Lyme disease and therefore, no blood test is needed. However, studies suggest that only about 30% people get a rash and therefore, a patient without a rash can still have Lyme disease.
Patients do not always remember a tick bite. Nymph ticks can be as small as a poppy seed.
Blood tests for Lyme disease are not very reliable, particularly if the patient is tested too early, after antibiotics or a long time after the bite. Five separate teams of researchers have found that the reliability of the test used by the NHS is lower than 60%. Because of this low test sensitivity, Lyme disease should be a clinical diagnosis – based on symptoms.
Lyme infection can never be ruled out by negative tests and there is no test which can confirm successful treatment of Lyme disease.
If Lyme disease is treated early, there is more of a chance of patients returning to full health. If left untreated, it can become a chronic, debilitating and disabling condition.
Caudwell Lyme Disease charity’s survey of 500 Lyme disease sufferers found that 75% are too unwell to work at all.
Lyme disease can kill and Lyme sufferers have been known to take their own lives.
Lyme disease rarely travels alone. According to a recent patient survey, a third of people in the UK with Lyme disease have at least one other tick-borne infection, known as co-infections which complicate the clinical picture. These include Babesia, Bartonella, Ehrlichia, Mycoplasma and Rickettsia.
There is widespread, international denial about chronic Lyme disease and thousands of patients are being left without NHS care and who are seeking private treatment options, often abroad. Many simply cannot afford treatment.
There are conflicting opinions about how best to treat Lyme disease. Public Health England advocates shorter courses of antibiotics whereas some Lyme disease experts insist that longer courses are necessary to treat both newly infected patients and chronic cases. There is also scientific evidence showing that Lyme disease can persist beyond a short course of treatment but this is largely ignored by the mainstream medical profession.
UK guidance for treatment of early disease has not been proven to be effective. Many Lyme experts regard it as inadequate and one study conducted in the US showed that more than 50% of patients were still ill 6-12 months after a short term course of antibiotics. Work is ongoing (independent reviews and the NICE guideline writing process) to examine appropriate treatment, but doctors very frequently prescribe LESS treatment than the current guidance.
The majority of doctors seem to have little knowledge about Lyme disease. The online RCGP course on Lyme disease had only been taken by 2% of the GP population, when it was last possible to access figures.