SUFFERERS of a debilitating disease are to stage a national protest in a bid to secure better diagnosis and treatment.
The protest is being backed by a petition which has so far gained more than 10,000 signatures from people urging a Government investigation into Lyme disease, which can be fatal if left untreated.
Scotland is a hotspot for the condition and the protesters claim there is an unrecognised epidemic.
They are calling for Lyme borreliosis to be made a schedule-one notifiable disease, so that the true UK incidence of Lyme is recognised.
Germany has around 250,000 cases a year compared with official UK figures of around 1,000. The campaigners believe the true incidence in this country could be as much as 30,000 cases annually.
Lorraine Murray, 44, of Montrose, has joined the campaign after being ill for 18 months, misdiagnosed with chronic fatigue, denied further treatment after four weeks of antibiotics and then diagnosed with Lyme disease after paying for private testing.
Lyme can have can have devastating symptoms if left untreated, including fever, chills, headache, sleep disturbances, muscle and joint pain, arthritis, heart problems, bladder problems, paralysis, facial palsy, a bull's-eye rash, chronic fatigue, dizziness, breathing problems, tinnitus, blindness, meningitis, encephalitis, problems with balance and, occasionally, death.
Murray said: “I was bitten in the summer of 2014 but I had no bull's-eye rash that I was aware of. For the first six months my symptoms were cyclic flu, fever, nausea, stiff neck, eye and ear sensitivity and chronic fatigue progressing on to difficulty walking, low blood pressure and numerous other symptoms.
"I was misdiagnosed as having chronic fatigue syndrome/ME and was very ill every day and hardly able to get out of bed. It was horrendous.
"In the end I diagnosed myself according to symptoms, then got a clinical diagnosis from my GP.
“I tested positive for Lyme borreliosis, but the NHS failed to pick this up with its current Lyme test. We had to resort to paying for private testing and treatment. I am in the sixth month of private treatment which, obviously, I fund myself. More needs to be done to raise awareness of the symptoms of Lyme disease in humans.”
The campaigners say that conditions such as myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), multiple sclerosis (MS), Parkinson’s disease, Alzheimer’s, bipolar disease and autistic spectrum disorder have often been misdiagnosed when the sufferer has Lyme disease.
They say there is also evidence that Lyme borreliosis can be transmitted sexually and maternally, with research showing it has caused stillbirths and damage to the foetus in pregnancy.
Campaigners claim the NHS uses diagnostic tests for Lyme borreliosis that are known to be inaccurate and unreliable, which has resulted in thousands of symptomatic patients being systematically denied treatment.
Antibody testing for cases of clinically diagnosed Lyme disease is only between 20 and 60 per cent reliable, they claim, as antibody tests depend on the response of the immune system to the invading pathogen and this can vary considerably from individual to individual.
UK charity Lyme Disease Action said: “The current level of diagnosis is appalling.”
Westminster’s Public Health Minister Jane Ellison announced this week that the Government will look at reviewing the way the disease is tested and treated.
The protest takes place on May 24 at Parliament Square in London.
SUFFERERS of a debilitating disease are to stage a national protest in a bid to secure better diagnosis and treatment.
The protest is being backed by a petition which has so far gained over 10,000 signatures from people urging a government investigation into Lyme disease which can be fatal if left untreated.
Scotland is a hotspot for the condition and the protesters claim there is an unrecognized epidemic.
They are calling for Lyme borreliosis to be made a schedule one notifiable disease, so that the true UK incidence of Lyme is recognised. Germany has around 250,000 cases a year compared with official UK figures of around 1,000. The campaigners believe the true incidece in this country could be as much as 30,000 cases annually.
Lorraine Murray, age 44, from Montrose has joined the campaign after being ill for 18 months, misdiagnosed with chronic fatigue, denied further treatment after four weeks of antibiotics and then diagnosed with Lyme’s disease after paying for private testing.
The disease can have can have devastating symptoms if left untreated, including fever, chills, headache, sleep disturbances, muscle and joint pain, arthritis, heart problems, bladder problems, paralysis, facial palsy, a bullseye rash, chronic fatigue, dizziness, breathing problems, tinnitus, blindness, meningitis, encephalitis, problems with balance and occasionally death.
Said Murray: “I was bitten in the summer of 2014 but I had no bulls eye rash that I was aware of. For the first six months my symptoms were cyclic flu, fever, nausea, stiff neck, eye and ear sensitivity and chronic fatigue progressing on to difficulty walking, low blood pressure and numerous other symptoms. I was misdiagnosed as having chronic fatigue syndrome/ ME and I was very ill every single day and hardly able to get out of bed. It was horrendous. In the end I diagnosed myself according to symptoms, then got a clinical diagnosis from my GP.
“I have tested positive for Lyme borreliosis but the NHS failed to pick this up with the current NHS Lyme test. We had to resort to paying for private testing and treatment. I am currently in the sixth month of private treatment which I fund myself. More needs to be done to raise awareness of the symptoms of Lyme disease in humans.”
The campaigners say that conditions such as myalgic encephalomyelitis (ME), chronic fatigue Syndrome (CFS), multiple sclerosis (MS), Parkinson’s Disease, Alzheimer’s, bi-polar disease and autistic spectrum disorder (ASD) have often been misdiagnosed when the sufferer actually has Lyme disease. They say there is also evidence that Lyme borreliosis can be transmitted sexually and maternally with research showing it has caused stillbirths and damage to the foetus in pregnancy.
They claim that the NHS uses diagnostic tests for Lyme borreliosis that are known to be inaccurate and unreliable which has resulted in hundreds and thousands of symptomatic patients being systematically denied treatment. Antibody testing for cases of clinically diagnosed Lyme disease is only between 20 and 60 per cent reliable, they claim, as antibody tests depend on the response of the immune system to the invading pathogen and this can vary considerably from individual to individual.
UK Charity Lyme Disease Action said: “The current level of diagnosis is appalling.”
Westminster’s Public Health minister Jane Ellison this week announced the government was to look at reviewing the way the disease is tested and treated.
The protest takes place on May 24 at Parliament Square in London.
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