Testimonials

Lyme Disease UK brings together people suffering with Lyme Disease to provide guidance, support and a voice to us all.  If you’re thinking of joining us, read below to hear some of our favourite testimonials:

“LDUK has rapidly become the best place on the net for resources and support for Lyme Disease in the UK. The leaders work tirelessly to provide up to the minute research and information and despite their own illnesses, they support everyone who needs it.”

“This forum has the lot – a warm friendly atmosphere, all the support patients need, amazing leadership which ensures that special atmosphere prevails, a massive library of relevant, up to date information and also participation in symposia and seminars. Members are welcomed, supported and encouraged through the trials of this awful disease.”

“Fantastic help, information and support for both sufferers of Lyme Disease and their families.”

“LDUK has become an important lifeline for people with Lyme disease who often feel isolated and alone. They are also stakeholders in the NICE committee for Lyme disease guidelines. The group support each other well and share vital information with each other. Many of us would be lost without them.”

“LDUK provide a vital space for 1000s of UK Lyme patients and those concerned that they have been infected. They gave me information and support that is not provided by any other organisation in the UK. As a direct result of joining their group I am in treatment. I am one of many members who feel that LDUK has changed, if not saved, their lives!”

“The support and knowledge that the founders and members of this group give for many people suffering from Lyme Disease and co-infections and ignored by the mainstream medical profession is phenomenal.”

“With over 5 and a half thousand members this forum is an invaluable source of information and support for anyone suffering from Lyme disease. A warm, compassionate, insightful and extremely knowledgeable group.”

“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.”

“This patient support network has a private discussion group where we discuss anything and everything to do with Lyme disease and the many problems we face with diagnosis and treatment in the UK. If it wasn’t for this group I’d be a lot worse off. Lyme Disease UK has had such a positive impact on my Lyme journey.”

“Louise and Natasha have created a fantastic supportive group in the midst of their own illness. They put a lot of time and effort into the rapidly growing group, offering support, education and information to sufferers and relatives of sufferers of this terribly misunderstood disease. It gives us all hope that one day proper diagnosis and treatment will be available.”

“Lyme disease sufferers feel isolated, abandoned, socially stigmatised and are often branded as mentally ill or malingerers when they actually have a treatable infection. Natasha and Louise both have Lyme and are really quite sick but despite this, they put a huge amount of effort in, daily, supporting other sufferers and bringing a voice to those who are voiceless. The group is very active, with online discussion, friendship, and engagement with the wider political and policy regarding Lyme disease in the uk. The group is an absolute lifeline to many.”

“Lyme Disease UK is a wonderful forum! It has helped me so much while I’ve been navigating my own health problems. Natasha & Louise did a wonderful thing when they founded the community and, together with their admin helpers, they do a great job running it. They’re very responsive to any questions, and are so knowledgeable and kind. Thank you LDUK!”

“LDUK gave me the support to look for answers to my declining health when I was at rock bottom a few years ago. Without the kindness, support, encouragement and knowledge within this group I would be in a much worse position, of that I’ve no doubt. I’m proud to be a part of the admin team, it gives me a sense of purpose. I’m also so grateful for the wonderful friends I’ve made along the way .”

“Lyme is a disease that no one understands… except people in this amazing group. Thank you for making me realise I am not completely crazy and this is not all in my head… because, sadly, I felt this way for a very long time before I joined this group. I also like how peaceful and constructive the group’s awareness campaigns are.
One more thing I love about this group, is opportunities like this one to share a bit of who we are and what we like. Thank you for giving us a voice as well as support.”

“The group freed me to realise that it wasn’t in my mind and that I was right to follow my instinct.”

“Whilst in the depths of excruciating pain, here I found belief, compassion and solutions whereas elsewhere I found none of these.”

“Realising that I am not alone. Prior to joining this group I had never spoken to anyone else who had this illness.”

“The treatment path we are now following would not have happened if it were not for this page and the support to carry on when things are tough.
Most importantly hope and knowledge, I love the stories of people now able to carry on with their lives. Thank you.”

“‘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 when the light at the end of my tunnel was more symptoms. They’ve laughed, cried and spurred me on to keep fighting when all I’ve wanted to do is curl up into a ball and go to sleep and never wake up again. 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’d also like to say that I’m antibiotics free for 6 months.”

“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.”

“Confirmed what we thought and pointed us towards testing/treatment/healing. Lifesaver.”

“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.”

“Wonderful, intelligent, helpful people, wonderful info, a place to bounce around ideas when stuck, a place to have a laugh with people that get the craziness of our world, a place to ask for support from people that understand when it all gets too much and just somewhere you can hang out where you don’t feel like you are talking a foreign language to the rest of the world!”

“Advice and understanding – when you have absolutely no help anywhere else. Invaluable, thank you.”

“I feel I am not alone. The Lyme community understand. There is always someone to help at any time of the day or night.”