Our primary aim as a charity is to fund research that will lead to a truly reliable test and cure via the NHS for every Lyme disease patient. We also campaign to raise awareness, educate the public on how to prevent Lyme disease, and offer information and advice on diagnosis and treatment based on the NICE guideline.
Since the charity was launched in 2016, well over 500 people have approached us for information and advice. Many of them have stayed in touch to share Lyme success stories after treatment, and thank us for the part we’ve played in helping them. We’re so grateful to be in a position to offer help to others, and it’s great to hear when and how we’re making a difference.
Kirsty first got in touch towards the end of 2018, looking for advice when she was unsure of the treatment she was receiving from doctors.
She was bitten on holiday in Portugal and developed a bull’s eye rash. Her GP diagnosed Lyme disease and prescribed a course of Doxycycline. But she still felt unwell after treatment and despite being referred to the local hospital, wasn’t receiving further help.
I contacted Caudwell LymeCo for advice as I was concerned that I was receiving no treatment and getting worse. The charity told me about the NICE guidelines and explained I should be prescribed a second course of antibiotics.
When I returned to the hospital I was able to discuss this with them and I started a second course. Unfortunately, my health continued to decline. The hospital insisted on testing to prove I had a current Lyme infection. They reversed my diagnosis after a negative result and tried to discharge me back to my GP. My records were amended to say that I had Chronic Fatigue Syndrome and I was told that I had never had Lyme disease.
Caudwell LymeCo told me that no test can prove a current Lyme infection, they just show there has been an immune response at some time, and they can give false negatives. They also explained that the guidelines say that the rash is much more accurate than testing and a diagnosis based on a rash should not be reversed because of a negative test ELISA result. Having access to information enabled me to ask the right questions and challenge decisions that I felt were wrong.
The hospital agreed to conduct an immunoblot and as a result I was diagnosed with Lyme disease again. I am still on the long road to recovery ten months later but having an accurate medical record is one less thing to worry about, my GP is more able to support me appropriately during my recovery.”
Dan originally got in touch with Caudwell LymeCo in March 2019.
He contracted acute Lyme Disease after being bitten by a tick on the NRA shooting grounds in Bisley, Surrey.
With symptoms worsening and treatment non-effective, he reached out to Caudwell LymeCo for advice.
“I had no idea that tick bites were a ‘thing’ in the UK and even less of an idea that they can cause Lyme here.
So I was surprised to find a tick embedded in my side when I got home. Despite removing the tick the head remained embedded, so I sought medical advice pretty quickly. I was advised to let the head grow out over the next couple of weeks, which it did. But by then I’d started developing symptoms: a spreading red ring, and eye problems with blood in my tears and some joint pain. Within another week the joint pains had spread and become intolerable and my GP put me onto Doxycycline, at which point I experienced a Jarisch-Herxheimer reaction.
My symptoms worsened and I started losing the ability to form sentences, had severe memory lapses and my hands wouldn’t stop trembling uncontrollably. The joint pains spread and worsened and kept me awake at night. The dose of Doxycycline was increased though unfortunately I was advised to take it with milk, which I only later discovered reduces its effectiveness significantly.
After the antibiotics I was moderately improved with fewer joint pains, but still felt rough, the tremor persisted and I was exceptionally fatigued and debilitated. I was diagnosed with Reiter’s Syndrome (reactive arthritis) whilst brain tests showed my brain had been affected and was still not fully recovered.
A few months later my symptoms worsened rapidly: worse joint pains, impaired coordination and stronger hand tremors.
I reached out to Caudwell Lyme and spoke to Veronica. She listened sympathetically to my story, and noted my history and the treatment I had received. She believed that the infection was still active and advised me to go back to my GP and press for further treatment. She was able to give wonderfully clear and helpful advice concerning Lyme disease, the treatments available, the NICE guidelines to which all medical professional should work (though often don’t) and what to expect going forward from treatment. She was even able to offer some advice to my GP who liaised with her regarding treatment, the NICE guidelines and the recommended drug treatments. It was primarily through her involvement that I was able to get a second course of treatment: high levels of Amoxicillin followed immediately by a neurological dose of Doxycyline.
The latest antibiotics have helped but my condition is still ongoing. The Caudwell Lyme charity has been there for me, running through further options with me, and helping be a voice for me when sometimes those who should be ‘in the know’ simply aren’t.”
Dee got in touch in May 2018 with concerns that her two young daughters had Lyme disease. We shared a lot of research-based information on Lyme disease and gave Dee advice and reassurances that the path she was following to obtain treatment for her children was the right one.
“Having realised that both myself and at least one of my young daughters had Lyme I was desperate for advice from someone who had walked in my shoes and understood my despair. I read about Caudwell Lyme online and gave them a ring.
Veronica has literally been a life saver. Her empathy, understanding, and fountain of knowledge has been invaluable. Finally someone was giving me a glimmer of hope. My family and I had been deserted by the government and the NHS but at last someone was listening and trying to help us.
I have felt suicidal many times this year due to the physical and mental pain of this lonely journey. In the back of my mind I have always known that when at rock bottom the Caudwell charity would lend an understanding and educated ear. Their time, care and advice must have saved many lives and much suffering. It is such a shame that UK residents need the Caudwell’s but we are incredibly blessed to have them by our side, walking this horrendous path with us. My family can’t thank you enough.”
Dee has been a great support for our awareness campaign, writing letters to her MP, gathering support from friends and family, and offering to work as a volunteer giving presentations in local schools and community centres on how to spot and prevent Lyme disease.
Liz got in touch with us in June 2018, desperate for help after her 4 year old son developed symptoms of Lyme disease, including the characteristic skin rash. Being from a family who loved the outdoors, she was aware of Lyme disease and its symptoms, and often carried a tick remover on walks, but she hadn’t spotted a tick this time. Her son showed no major symptoms apart from a little bit of sniffles and the rash.
The first doctor she saw refused to treat him in line with the NICE guideline, prescribing a lower than recommended dose of amoxicillin. They also proposed doing a Lyme disease blood test, which should not be done in people with a diagnosed Lyme rash – the blood test is less reliable than the rash for diagnostic purposes.
Liz asked for a second opinion, and the second doctor agreed to a higher dose, but of a different antibiotic that wasn’t in the guideline. He was basing this on the information in the British National Formulary – the handbook for drug dosing in the UK. Liz still felt something wasn’t right. She went back to the second doctor to ask that he prescribe an antibiotic recommended by the guideline, but he refused. Chatting in a patient group on Facebook, someone recommended that she get in touch with Caudwell LymeCo for advice.
” I wasn’t happy with the treatment the doctors had given. No one was listening to me. When I called Veronica at Caudwell LymeCo, she assured me that I’d done all the right things, but encouraged me to go back to the doctors and push for the correct treatment in line with the guideline. At this point I burst into tears. I felt I’d been as pushy with them as I could, and it was getting me nowhere. Veronica offered to speak to the senior partner at the doctors, who agreed to take a call from her. Ten minutes later, I had a call back from them, saying a prescription for the correct medicine at the correct dose would be ready for me to pick up that afternoon.
I asked them why I had hit such a barrier in getting the right treatment, as I could have easily been sent away with the wrong medication. The doctors said they had identified a knowledge gap, and that they would update procedures at the surgery.
Veronica made me feel confident in what I was doing to get my son the right treatment, and I’m so glad I found the charity and they made the GP sit up and listen. ”
We are very glad to have played a part in this Lyme success story considering things turn out very differently for so many patients.
Alex contacted us in October 2018 after having testing positive for Lyme disease. She initially thought her tick bite was a spider bite and had waited about 5 weeks before realising that the symptoms she was developing may be Lyme disease.
She visited her GP, was diagnosed with Lyme disease, and was prescribed a course of doxycycline. On completing the course she developed pains in her neck, shoulders and collar bone. She went back to her GP who said the pains were signs of toxins in her system. Her blood test results showed no inflammation, so her GP’s advice was to see how things developed. If neurological symptoms did arise, she was told, she would be referred to a neurologist.
Alex knew something wasn’t right and didn’t want to wait this long, so she visited the Caudwell LymeCo’s website for more information. Here she spotted the NICE guideline recommendation for treatment of Lyme and went to see another doctor, who prescribed her amoxicillin.
She also got in touch with us directly to confirm her suspicions and check her actions. Veronica, who runs our helpdesk, explained that the need for a second course of treatment is fairly common among people whose initial diagnosis and treatment is delayed by 6 weeks or more after the tick bite – as Alex’s had been.
“I realised from this experience that not a lot is known about Lyme Disease full stop, and it was really reassuring to have the Caudwell LymeCo charity respond so quickly and knowledgeably and support me in choosing the right treatment course”
Had Alex waited longer, as GP suggested, and had not had access to this treatment information, she may have developed a very difficult to cure illness. With Lyme disease, prompt treatment can make a major difference to the ultimate outcome. The sooner a person is given full treatment, the better.
Sophie lives close to the Caudwell LymeCo office in Staffordshire, an area where people who catch Lyme disease are at increased risk of missed or late diagnosis. Ironically this is because Lyme seems to be rarer here than in some other areas of the country. This means fewer doctors know how to recognise the diagnostic Lyme rash, or even take Lyme disease into consideration as they sieve through possible diagnoses.
Sophie told us how John’s TV appearance helped her realise her daughter could have Lyme disease:
“My family visited Greece in July this year and to cut a long story short, my two year old daughter contracted Lyme Disease.
The week my daughter developed the bullseye spots, John had been on Countryfile and on our local radio in Staffordshire. I will never forget watching him on TV, on the verge of tears, realising what my daughter had. If it wasn’t for John Caudwell we would have been none the wiser.
Our GP thought the spots were mosquito bites – it was only when I mentioned Lyme Disease that he got his medical journal out.
We were referred to Royal Stoke and, sure enough, we got the diagnosis. Our GP admitted he had never come across a case of the disease before. After antibiotics, she seems fine and, fingers crossed, we caught it early.”
The information you have given me has made me feel more confident to discuss things with my GP and I am feeling much more positive.CJ, November 2018
Thank you so much for your extremely helpful reply and for answering my questions – I appreciate it very much. I feel very alone in all of this at the moment.MT, July 2018
Thank you so much for being there to support me. I was desperate to talk to someone who might understand, and you totally did. I’ve never found myself in such a desperate struggle.MF, July 2018
I cannot tell you how much it meant to receive some empathetic words and some suggestions of how I might progress my quest for treatment.
I am so grateful for the work that you are doing to educate the world.MD, May 2018