Lyme Disease UK provides patient support and advice
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 most commonly transmitted through the bite of an infected tick.
There are around 20 different species of tick in the UK. Ixodes ricinus is the species most likely to bite humans. It also known as the sheep/deer/castor bean tick.
Patients do not always remember a tick bite. Nymph ticks can be as small as a poppy seed.
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. Ticks can be found anywhere where there are pets, wild mammals and birds.
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.
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.
More research is desperately needed into other modes of transmission, for example via sexual contact, the blood supply and organ donation.
Lyme disease can cause a rash called an EM rash which is sometimes shaped like a bull’s-eye but not always. The rash is diagnostic of Lyme disease and therefore, no blood test is needed and treatment should be started straight away.
Blood tests for Lyme disease are not very reliable, particularly if the patient is tested too early. Because of inadequate testing, Lyme disease should be a clinical diagnosis – based on symptoms and signs in the absence of a positive test.
A 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.
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 and the NICE Lyme disease guideline 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 evidence showing that Lyme disease can persist beyond a short course of treatment but this is largely ignored by the mainstream medical profession.
People are often told that a tick has to be attached for a certain amount of time to pose a risk of transmitting Lyme disease. A minimum attachment time has never been established.
The resolution of an EM rash does not mean that the infection has cleared. It may be continuing systemically.
There are no Lyme disease specialists on the NHS
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, the true number could be much higher. We simply do not know yet.
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.
It is thought that only two thirds of patients with Lyme disease experience a rash therefore, a patient without a rash can still have Lyme disease. The rash usually appears within 1 to 4 weeks after the bite but can appear as early as 3 days or as late as 3 months afterwards. Rashes do not always occur at the bite site.
Caudwell Lyme Disease charity’s survey of 500 Lyme disease sufferers found that 75% are too unwell to work at all.
Many Lyme experts regard UK treatment protocols 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.