Andrew McGuinness
A.F McGuinness is an author, freelance editor and writing coach. Andrew has been a member of LDUK for a dozen years or more. His last novel, Anatomised, chronicles his harrowing Lyme journey. He wrote the book to raise greater awareness of Lyme disease, and it became recommended reading for doctors and consultants in the NHS. Andrew believes passionately in increasing the profile of the disease in the public domain, especially its physical and psychological impacts on patients and their carers. He has spoken about these during interviews for the BBC, SKY, ITN and ITV. As a patient ambassador, Andrew will continue this important work, hoping to effect positive change in both diagnosis and treatment.
Chris Ward
Chris lives in East Devon and was diagnosed with Lyme Disease in October 2024 and spent 3 weeks in hospital and a further week in a rehab unit as the disease took away his ability to walk almost overnight. Normally a social, outgoing individual Chris has found himself becoming more housebound, with deteriorating mobility, fatigue as well as suffering with the noise of increased sounds and large crowds, having been left debilitated from this horrendous disease.
Chris works as a Director of Procurement for a global tech / engineering company and has had the chance to work and live in many countries around the world before coming home and settling in East Devon. He lives in Sidmouth with his wife Ceri and has 3 grown up children who have now flown the nest.
Having worked in the Charity sector in past roles, Chris is passionate and determined to support the charity and raise awareness of Lyme Disease to help individuals become more aware of the illness and is committed in helping to promote further research and knowledge to help others.
Dan Duerden
Dan is 24 years old and works on his family farm in Blacko, Lancashire.
“I’m honoured to be an ambassador for LDUK. I’ve had Lyme disease for 3 years now after I was bitten by a tick while out shearing. I mistakenly thought it was ringworm and have experienced all sorts of symptoms ever since. Brain fog, fatigue and severe joint pain, leaving me unable to work for 18 months.Through treatment I’m gradually improving. I’m keen to help spread awareness on something people know little about!
Laura Edwards
Laura is a presenter, stand-up comedian and content creator and has worked on national televison and radio as well as interview at red carpet events. Laura has over a million followers on TikTok and in a change from her usual comedy content, made the film ‘Ticked off – Why I vanished’ in 2021 to help raise awareness of the impact of Lyme disease.
Laura was diagnosed with Lyme disease in 2019 and is currently three years into treatment. It took seven years of searching for a diagnosis to explain her symptoms of aches and pains, brain fog, fatigue, oedema and sore joints. Unfortunately Laura was misdiagnosed lots of times along the way before she was finally diagnosed with Lyme disease and multiple co-infections. Since treatment Laura has been able to start work again but at a much slower pace.
“I think there needs to be more awareness for Lyme disease sufferers especially in the UK and in the medical profession. I was told countless times by doctors that my symptoms were hormonal or it was implied I was “making a fuss”, and I’m really relieved now to have a diagnosis and make progress with my health. I still feel like it’s a journey of healing but I’m on the right track now, and I’m still learning all the time.
I hope one day to live a completely symptom-free life, get back to my career which I love and making upbeat and positive content.”
Malcolm Ginns BSc (Hons) MSc MCIEEM Mem.RES
Malcolm is a professional ecologist who has worked in the ecological consultancy and local authority sectors for over twenty years. His scientific specialisms include entomology (the scientific study of insects). Prior to contracting Lyme disease much of his consultancy work was related to the forestry sector. His career roles involved regular visits to forestry sites to survey for wildlife constraints prior to timber harvesting operations, or surveying upland moorland and grassland sites to assess the potential impacts of proposed woodland creation schemes, or other land uses such as windfarms or overhead powerlines. The vast majority of this work was located on sites across Scotland, with a smaller number being in northern England.
As much of Malcolm’s work was in connection with forestry he was required to undertake first aid at work courses with the added extra content specified by Forest and Land Scotland and the Forestry Commission in England. This extra content covered three specific areas, trauma injuries, hypothermia and Lyme disease. In addition, Malcolm was regularly writing risk assessments, both for his own work and the work being undertaken by others. Given the areas they were working in, almost all of these risk assessments made specific reference to Lyme disease. Consequently, Malcolm was highly aware of Lyme disease, the typical symptoms and how to minimise the risk of catching it. However, with the Scottish Governments ban on the herbicide Asulox (used for bracken control) Malcolm was often having to walk through strands of bracken that were taller than him. There was no way of avoiding this bracken as it would have meant not being able to complete the surveys, or in many cases would have added several extra miles of walking over rough terrain to the job.
In 2014, Malcolm had a tick bite which resulted in a bullseye rash and he had the typical Lyme disease symptoms of fatigue and sickness.
Malcolm went to his GP and was diagnosed with Lyme disease based on the bull’s-eye rash. The estate that he had been working on was a known Lyme disease hotspot, and his GP (at the time) also used to visit the same estate for recreational deer stalking. Malcolm was prescribed Amoxicillin for 21 says which seemed to work, however it took about two years to recover from the fatigue associated with Lyme disease.
Throughout the years leading up to 2020 he noticed a gradual decline in mobility (mainly in his left leg) which he initially put down to a historical knee injury. Malcolm went to see his GP and was put a waiting list to see orthopaedics. He was on this waiting list until the beginning of 2022 when he was given an MRI scan of his knee. It took several months for the results to come through and when they did, they said there was no damage. By this time his mobility was getting considerably worse and he was having to use two crutches to walk. At this point he self-referred to an NHS physiotherapist with the intention of getting them to refer him back to orthopaedics. However the physiotherapist called his GP and told me to go straight to my GP. Malcolm’s GP took one look at him and sent him to hospital in an ambulance. He was diagnosed with a stroke. This was then changed to Multiple Sclerosis until Malcolm himself realised that Lyme disease was a likely candidate due to his work.
Malcolm then contacted his GP and suggested that they should test for Lyme disease. Luckily, his GP took it seriously and immediately arranged the test (Malcom lives in small rural town in the southern uplands of Scotland where deer and game management are big employment sectors so his GP had seen it before). The test came back positive and Malcolm was admitted to hospital to receive six weeks of IV Ceftriaxone as a hospital inpatient. This was followed by six weeks of oral Doxycycline at home.
Two years after leaving hospital Malcolm is registered disabled, gets enhanced rate mobility, has to use crutches to walk around the house and a wheelchair or mobility scooter outside the house. In addition, Malcolm has to wear drop-foot braces on both legs/feet in order to lift his feet off the ground. He get regular (multiple times a day) clonus episodes in his legs which results in high frequency shaking of his legs and an inability to stand up. Malcolm uses hand controls to drive, gets botox injections every three months and take the muscle relaxant Baclofen three times a day, and the anticonvulsant Gabapentin. Malcolm has limited feeling below the waist and more-or-less no feeling below the knees. He also has bowel and bladder control issues and has to have help from carers every day. Malcolm has Neurological Lyme Disease, or Neuroborreliosis as the infection being is in his spinal cord. The symptoms are the same as those found in Multiple Sclerosis patients, hence the mis-diagnoses of a stroke and MS.
Roland Maxted
Roland is 57 years old, lives in Abbots Langley, Hertfordshire with wife Janet, who is a Clinical Psychologist, and their West Highland Terrier, Bubble. For 31 years he taught Religious Studies and English in secondary schools around the country, most recently at Berkhamsted School from 2005 – 2020 where he was also a Head of House.
Roland was diagnosed with Lyme disease in November 2020 but symptoms suggest that he had it for years. Roland has been receiving herbal treatment for almost a year and has been on antibiotics for four and a half months. Roland describes the impact the disease has had on his life and his efforts to raise awareness…
“Lyme Disease UK provides invaluable support for sufferers of both acute and late Lyme Disease. Not only has it put me in touch with people locally so that we have been able to form a support group for Beds, Bucks and Herts, but we are able to chat on the Facebook page, comparing experiences of symptoms, practitioners and treatment. I am grateful that I have now made new friends. The charity encouraged us to contact our local press in May 2023 for Lyme Awareness Month and my story was featured in the online version of the Hertfordshire Mercury as well as being rolled out to other local newspapers nationwide. I was privileged to be asked by the charity to contribute my story to a feature in British Vogue and, thanks to advice about how to write to my MP, I have been offered a meeting with him to discuss Lyme disease further.
When I’m well enough, I enjoy singing in my local choir, going to the gym and rowing at Broxbourne Rowing Club. I have been able to resume singing recently and am hopeful that I will be able to do more strenuous physical activity in the near future.”
Samantha Ash
Samantha’s youngest son contracted Lyme in 2013, while playing at a friend’s ninth birthday party in Windsor Great Park. Never having heard of Lyme disease at the time, the classic bullseye rash didn’t red flag a serious disease, and it took almost eighteen months to get diagnosed. He had a bone tumour removed from the site of the bite, and age ten became unable to read, struggled with speech and writing, and had a myriad of chronic pain and fatigue symptoms which left him housebound and unable to attend school.
Shortly after her son’s surgery, Samantha took both her sons for a short break away to The Highlands, where her eldest son also then contracted Lyme disease. Early symptoms of his included crippling pain in his spine and the soles of his feet, and all spinal discs have since shown herniation.
Both boys have had several diagnoses subsequent to contracting Lyme disease, including Langerhans Cell Histiocytosis (at the site of the tick bite), and Type 1 Diabetes.
Samantha has been an ambassador for Lyme Disease UK for more than five years, representing the charity at events in both Westminster and Holyrood, and in 2019 attended the NIHR Lyme and tick-borne disease workshop in Liverpool to speak on our behalf.
Campaigning for awareness and research into better diagnostic testing and
treatment has become a passion for Samantha, to try and stop this disease pulling the rug out from any other childhoods.
Sophie Ward
Sophie was bitten in 2008 in China, aged 14 when she was watching her friends at the Olympics. Her dream was to swim at the London 2012 Olympics and she was in the World Class programme. She was bitten by a tick while visiting pandas. Her health declined rapidly and doctors wanted to section her, labelling her with a mental disorder. Despite an increasing list of physical symptoms including blurred vision, food intolerances, joint pain, migraines and low blood pressure, she went undiagnosed for 9 years. Since receiving a diagnosis, Sophie has made it her mission to campaign and raise awareness about Lyme disease. Her work with LDUK motivates her to keep fighting and she is passionate about fundraising and making a difference.
Stephen and Angela Bullough
Stephen was a previous World, European and British martial arts champion and was/is a Karate 9th Dan. After a rash that was presumed ringworm and with a myriad of symptoms, Stephen entered the NHS system with each symptom split between various consultants.
After being given a disputed FND diagnosis by neurology, Stephen became seriously ill quickly. Sadly he lost his sight and the use of his legs in 2018, and despite having a private positive blood test from Germany, Stephen received no treatment from the NHS. With the help of LDUK and Professor Lambert, help was received and since 2018 his wife Angela has tirelessly pioneered to raise awareness, making it her mission to help Stephen and others with Lyme disease. Sadly, due to Stephen’s continued poor health and status seizures, Angela still has to battle the NHS on a regular basis due to their lack of knowledge and current non-existent treatment protocols for patients with chronic Lyme disease.
Tom Davies
Tom has been suffering with Lyme disease since April 2022 when he was bitten by a tick in Tenerife, Canary Islands. After successfully receiving treatment via a private specialist following countless failed GP and hospital visits, Tom wants to spread awareness of symptoms to look for so that people don’t go through the same dilemma and suffer as he did.
“Lyme Disease is a complicated illness and in my case, symptoms were so sporadic that it was nearly impossible to identify a cause until a rash appeared and/or typical symptoms including facial palsy. There isn’t enough information out there on Lyme disease after the acute phase and that’s why I would like to share my story and help others.”