Over the last few months, there has been a number of reports, papers, and studies announced on research for improving diagnosis and treatment of Lyme disease. In this latest blog we’ll aim to give an overview of some of these studies. Disulfiram for treatment of persisting symptoms Figures from the U.S suggest around 10% – … More Round up on recent Lyme research news
Yesterday, Science Media Centre held a briefing for scientists and journalists to discuss the state of the evidence on the number of UK Lyme disease cases, and the controversy around the tests and diagnosis. The meeting was instigated following concerns around the accuracy of the study published back in July that found cases of Lyme … More Claims that “most Britons who think they have Lyme disease actually suffer from chronic fatigue syndrome” further prove the need for accurate testing
Yesterday, as we marked three years to the day since Caudwell LymeCo officially became a charity, we met with Chief Scientific Adviser, Professor Chris Whitty at the Department of Health and Social Care, to discuss their future plans for research into Lyme disease. and how we and our founder, John Caudwell can support these plans. Lyme … More Meeting with the Department of Health & Social Care to discuss Lyme disease research
There can be a lot of misunderstanding around Lyme disease – such as what it is, and how it affects people, both in the short and long term. We recently asked our social media followers what they wish other people knew about Lyme disease, and we got a wide range of responses. Some wished for … More What you wish people knew about Lyme disease
It’s now been one week since the BMJ Open published a study based on the records from a GP medical database of 8.4 million people from between 2001 and 2012, that ultimately suggested a much higher number of annual cases of Lyme disease than in previous estimates. It’s likely that you saw the news and … More Reactions to the BMJ Open study on Lyme disease – and what’s next?
The NICE Quality Standard for Lyme disease was published yesterday (10th July 2019). The quality standard covers diagnosing and managing Lyme disease in people of all ages. It also includes raising public awareness about prevention. It aims to work alongside the NICE Guideline for Lyme disease, helping to improve care of Lyme patients and increase … More NICE Quality Standard for Lyme disease now published
For this week’s blog feature, we’re sharing the story of Lyme patient Tracy Dopson, who wrote in to the charity with this piece on her experiences, and what she wants others to know. If you’re often asked by friends and family how you are, and you don’t know how to reply, or how to explain … More Living with Lyme disease…….and I’M FINE!
If your child has been diagnosed with Lyme disease, you may be worried about how long they will remain ill or whether there may be any permanent effects. Most people who catch Lyme disease, and are treated for it promptly, do make a full recovery. This article gives you practical advice on how to look … More How to look after a child with Lyme disease
Catching any illness when you’re pregnant is frightening. Once you start reading about Lyme disease and finding more stories on the internet, this may ramp up to feeling terrified. Don’t Panic! The most important thing to remember is that treatment exists. The Centers for Disease Control and Prevention (CDC) in America has also addressed the … More What to do if you catch Lyme disease when you’re pregnant
Teaching at home Do your children know how to tell a tick from a spider? Do they know which kind of flies drink blood? Do they know how to protect themselves from Britain’s most dangerous parasite? We have downloadable worksheets to teach them how to avoid tick danger, without scaring them off playing outside! There … More Teach your children some tick bite safety
As it’s Lyme Awareness Month, the weather is improving, and thoughts may be turning to summer holidays, this week’s blog features our top ten tips on how to best protect yourself from ticks whilst camping. Camping holidays are a fantastic way to enjoy our beautiful countryside and bring families or friends together. You can give … More Ten ways to beat the blood suckers when you go camping this summer
Caudwell LymeCo has just run a survey of over 200 UK Lyme disease patients to find out how well their doctors seemed to know and follow the NICE guideline. The survey results we reported were based on the responses given by patients and we have not independently verified them with their doctors or diagnostic laboratories. … More Progress needed in patient treatment under the NICE guideline
Our recent survey asked patients about their experience of diagnosis and treatment for Lyme disease since the NICE guideline has been published. It showed that there have been some improvements – but there are some areas which could be much better. We decided to make the last question a free text entry, so people could … More Comments by Lyme disease patients on the NICE guideline
Last week, the QSAC (Quality Standard Assurance Committee) for Lyme disease met for the second and final meeting on the quality statements that will be provided for doctors, nurses, and other clinical staff when dealing with Lyme disease. The aim of quality statements A “quality standard” contains brief action-focused statements about a specific patient experience … More NHS Quality Standard for Lyme disease at Second Stage
The guideline will be one year old in a few weeks’ time: how many doctors know what it says? Caudwell LymeCo has just run a survey of 212 UK Lyme disease patients to find out how well their doctors seemed to know and follow the NICE guideline. The survey results we report here are based … More LymeCo Survey Results: Is the NICE Guideline being followed?
So you have been diagnosed with Lyme disease, you have had a course of antibiotics, and you still feel ill? This happens to a lot of people who catch Lyme disease. If you don’t know what to do, read on. 1. Ask your doctor if you need a second course of antibiotics Return to your … More What to do if you still feel ill after your Lyme disease treatment has finished
Last month, Lyme disease sufferer, Charlotte Pegg wrote to us to share some of the neurological symptoms that she’d been suffering from. She was keen to raise awareness of the more rare parts of the illness, so that anyone who experiences the same may spot them for what they are, preventing any delay in diagnosis: … More Case Study – patient shares rare symptoms of Lyme disease
So you’ve just been diagnosed with Lyme disease. Now what? 1. Don’t panic! The amount of doom and gloom about Lyme disease on the internet may make you think you have something worse than anthrax. Just remember that more than half of people who catch Lyme disease recover completely, and even a sizeable proportion of … More What to do if you’ve just been diagnosed with Lyme disease
If you have just become ill Time is of the essence. Delaying a visit to the doctor can make the difference between full recovery and chronic symptoms, so see the doctor right away if you suspect Lyme disease. 1. If you have been bitten by a tick, tell your doctor the details If you removed … More What to do if you think you might have Lyme disease
Caudwell LymeCo began the year 2016, as soon as the charity was founded, by giving UK Lyme disease patients a voice with our survey of 500 people. The survey highlighted years of neglect for almost all our respondents, alarming delays in their diagnosis and, for most, insufficient treatment that left them unable to resume their … More Survey: Is the NICE guideline for Lyme disease being followed?