In the UK, Lyme disease isn’t well known and the mainstream view remains, especially amongst Infectious Disease consultants that the disease is hard to catch and easy to treat. The public are largely unaware of tick bite prevention or the seriousness of Lyme and associated diseases. We protest to try to affect change within the NHS, to call attention to the vast suffering of patients and to educate the public on the dangers of vector borne disease in the UK.
May is Lyme disease awareness month and is when the Worldwide Lyme Disease Protest 2014 will take place. The UK’s protests will be in Manchester on 16th May. Have a look at the UK Protest website for more information. It includes links to patient stories, scientific studies and more.
Mission Statement – Why We’re Protesting
We want better diagnosis of Lyme Borreliosis
- Diagnosis based on history and symptoms, not testing alone. Using flawed testing to exclude Lyme and therefore diagnose ME or fibromyalgia is harmful to patients
- Better testing. Current over-reliance on two-tier antibody testing misses many cases for documented reasons and using the tests to exclude Lyme goes against the manufacturer’s guidelines. Overseas labs have developed methods based on immunofluorescence, culture of blood and lymphocyte transformation tests (as used in TB) which should be investigated for use here.
- Trials of antibiotics can and should be used to aid diagnosis based on patient responses
We want better treatment
- Short courses of antibiotics are only sufficient in stage 1 Lyme, a 10 year old infection will naturally require a longer course of antibiotics.
- Treatment until symptoms are resolved, rather than based on outdated ideas that the infection cannot survive past 4 weeks of treatment (this has been debunked in animal studies)
- Discussion with experienced doctors in the US and Germany may help educate inexperienced doctors here in the safe use of longer courses of single or combination antibiotics for Lyme, as are used in TB and Q-fever