“Although I have no direct experience of the illness, I am aware that Lyme disease is one of the most unpleasant illnesses to have. The multiplicity of symptoms that are generated by such a tiny organism are bewildering to patients, their carers and, to a very large extent, the medical profession. We don’t know how many people have been infected, or how many of those infected are suffering Lyme symptoms simply because the current NHS testing system does not provide all the answers. The story is not complete when a patient is finally given a diagnosis of Lyme, for there is no universally agreed treatment for its chronic symptoms and unfortunately, in far too many cases, it is too late for a cure. Lyme Disease UK is doing a great deal to break down the scepticism that surrounds the illness and their efforts to promote wider knowledge, accurate diagnosis through clinical history taking and effective diagnostic tests, and their invaluable advice and assistance given by sufferers to suffers has my heartfelt support.” – Countess of Mar
LDUK brings Lyme disease patients together online for peer support in our Online Community on Facebook. There are currently over 12,000 members of the closed Facebook Group where patients and their loved ones can discuss their experiences and get support from fellow sufferers. The comments below are from members of our Online Community who have benefitted from the support available:
“Fantastic help, information and support for both sufferers of Lyme Disease and their families.”
“A community which offers an invaluable source of support for thousands of patients across the UK who are dealing with an illness that can cause very intense suffering, but which is still not fully understood by the UK medical community. LDUK is a lifeline but is also involved in many efforts to improve the handling of Lyme disease in the UK.”
“‘I found being a mum of a Lyme sufferer very lonely, people were sympathetic, but they didn’t really understand fully or get how devastating this illness can be. Connecting with the community has helped us to move forward as a family and however horrible life becomes, I know we are not alone.”
“LDUK has made me realise I’m not alone and my symptoms aren’t unusual which helps knowing and learning how other people manage them.”
“This group of amazing people have been there for me in my darkest hours…I honestly can’t thank you all enough. I’m now stable and living the life I used to lead for the first time in 6 years.”
“I find it hard not to get emotional thinking about [how the community has helped me]. This community has given my kids their mum back. When I joined LDUK, I honestly thought that I was the only person in the world to have my bizarre set of symptoms when I was having such a difficult time getting diagnosed and listened to by doctors. Then the loneliness and despair and fear of coping with a Lyme diagnosis was so painful. Without the kindness of people in this community I would still be struggling alone and probably wouldn’t have found treatment or improved my health over the past 3 years. I will be forever grateful.”
“LDUK has maintained my sanity whilst guiding me through this parallel universe. I found my treatment and doctor through all of your advice and compassion. I’m on the road to remission after 29 years of despair.”
“Such a mine of information. So nice also to be able to talk to people who ‘get it’. And you just don’t get it until you’ve got it.”
“This group pulled me out of a black hole when I was at my worst. It’s helped me grow in knowledge and given me the support I needed throughout my 6 year struggle, and now I try my best to give back to others in need.”