Fund Lyme Disease Treatment For Chloe D

We are hoping for Chloe to recover from Chronic Lyme Disease. We have created this on behalf of Chloe to help fund her medical costs. Chloe has explained her story below.

For those of you who know me well, you will be aware that I have been chronically ill for the past 7 years and have been trying to get my health and my life back. I was originally diagnosed with ‘Post - Viral Chronic Fatigue Syndrome’ and then ‘Myalgic Encephalomyelitis’ in 2016, but have since been diagnosed with Chronic Lyme Disease, along with several co-infections including Babesia, Bartonella and Chlamydia pneumonaie, and also heavy metal toxicity, leaky gut and an array of other issues caused by the infections. As it is believed that I was infected with Lyme disease in 2004, after which point I began to experience a range of what we thought were unconnected symptoms and illnesses for the next 12 years before my body crashed in 2016, my case is therefore very complex and in the later stage of Lyme disease. This means that it is a complicated and difficult route to remission if not recovery.

I became very unwell in 2016 after a viral infection in March and did not get better, sleeping 21 hours a day to begin with. When trying to return to a normal life of A-levels, dancing, working and socialising, I found that I could barely manage to get through an hour of ballet class when I was used to dancing 25 hours a week alongside a very busy and active lifestyle, and now had a list of symptoms that became increasingly debilitating and I would regularly need to sleep for days at a time. I was constantly at the Doctor’s for blood tests and investigations, but everything came back ‘normal’. It is at this point that I was diagnosed with ME, and became too unwell to move to London to take up my place at The Royal Academy of Dance in Battersea. In the years following, I experienced a lot of ‘crashes’ and had to try to learn to manage my symptoms whilst carrying on with life when I could, as I was having monthly spells several times a year, where I was bed bound, if not housebound from the illness, symptoms and exhaustion that came from trying to do everyday things. We tried several alternative therapies and treatments to aid my symptoms but were told that these were caused by ME and that I had to learn to manage them.

I tested positive for Lyme disease at the end of 2019, and since then I have been treated by several different Lyme and Infectious Disease Specialists in Ireland, Scotland and Germany. Over the last 3 years, we have spent countless hours researching possible treatment options. I have tried multiple antibiotics, supplements and herbal protocols that have been quite intense, ranging from 4 months to 16 months in duration and taking over 300 tablets and tinctures a week at some points. Although some of the treatments gave me some significant improvements for the first 6 months, I would plateau and then decline and nothing has worked long-term. Chronic Lyme Disease is significantly lacking in understanding and therefore treatment for it is very difficult and not available on the NHS, partly due to inefficient testing. My family and I have spent tens of thousands of pounds on private treatments, tests and consultations with specialists in the hope of me getting better, alongside many holistic treatments to help me manage everyday symptoms such as pain, but unfortunately, nothing has been the answer yet.

Lyme disease is caused by a spirochete bacteria called Borrelia which is passed on through a tick bite. There are also many other tick-borne infections, including Babesia, Bartonella and Chlamydia pneumoniae, which I have tested positive for. The Lyme spirochetes and pathogens are very clever bacteria, as they are able to hide within the body’s tissues and systems and create a biofilm to shield themselves from the immune system and treatment. This therefore makes treating the infections very difficult, particularly in the later stage of Lyme disease, as the infections have infiltrated a lot of my body’s systems, organs and tissues and are able to adapt and hide from antibiotics and any immune response, and later multiply. These infections also significantly weaken the immune system, and therefore prevent the body from fighting off the infections. On a recent test, my CD57 cells tested at 17, and have been as low as 3 (for reference, they should be above at least 60, if not 100). With the infections causing such a high level of chronic inflammation and toxicity throughout my body, it is in a constant state of flight or fight, and regularly runs on cortisol and adrenaline to get me through the day, which further hinders any ability to heal. I therefore spend the majority of my time resting.

For every day that I go out, I spend weeks/months at home and have long periods where I am housebound or bedbound and reliant on my family to care for me. Those close to me know that I have many continuous spells throughout months/the year where I tend to disappear, as I am so unwell in bed I struggle to communicate with anyone. I do have good days where I am able to go out, or a good spell where the amount or intensity of symptoms I am dealing with lightens, but even on these days, I am limited in what I can manage, i.e if I go out for a few hours, that is all I am able to do that day and the days following and even on the good days I am never ‘normal’.

Lyme disease has taken so much away from me; my early 20's, being able to attend ballet school, dancing, adventures, the ability to be spontaneous, independence, work, friends, hobbies, opportunities, confidence, time, predictability, and even little things like a view or going on a walk. I cannot remember the last day that I did not feel exhausted and the symptoms are relentless. It is overwhelming to deal with the unknown of how long I will have to deal with all of the symptoms that I experience regularly whilst also having to constantly pace myself to give myself any chance of not completely crashing. These symptoms include; fatigue, post-exertional malaise, muscle and joint pain (either everywhere all at once or migratory), head and neck pressure, headaches, brain fog, eye pain, anxiety, processing and concentration difficulties, insomnia, nausea, migraines, flu-like symptoms, heartburn, light and temperature sensitivity, sore feet, puffy face, breathlessness, heart palpitations and tremors, alongside multiple others which have fluctuated over the years. Fatigue has always been my worst symptom and is incredibly debilitating. The fatigue from Lyme disease is more than just ‘tiredness’, it is the feeling of complete physical and mental exhaustion on a cellular level, resulting in me not having the energy to talk, lift my head or walk. I find it difficult to describe just how difficult the past 7 years have been for not just myself but my family too. Chronic Lyme disease is debilitating and isolating and I know that we all are desperately hoping that the day will come soon when I am not only free from the constant symptoms but also when I can get back to enjoying all of the things I miss out on and that we all take so easily for granted.

I am currently being treated by a Functional Medical Doctor who specialises in Lyme disease, who after further testing and a full case history, has created a detailed treatment programme for myself that looks in depth at all of the issues going on in my body. We are looking at a strategic approach in addressing the multiple infections, whilst supporting my immune system, detoxing and reducing inflammation. Although it is early days at the moment, I am hopeful that this protocol will be successful in helping me begin to improve to a manageable level where I can have relief from the symptoms and enjoy life.

I understand how difficult the cost of literally everything is for everyone at the moment and understand that it may just not be possible for people to donate. If you are able and would like to donate to support with the costs of appointments, treatments, tests, medications and expenses, I would be very grateful for your support and the help it will be in continuing to try to get me better. To those of you who have read my story and would like more information, thank you for reading and I am happy to talk to you more about it.

I’m going to share regular updates of my progress and treatments, and what the next step is to improving my health. We are also planning some fundraising, the first being my Dad planning to complete ‘Eat Your Greens’. With May being Lyme Disease Awareness Month, many buildings will be lit up green, including Darlington Hippodrome and Town Clock in the hope that this will help to raise awareness, understanding, funding and research. I have attached a link below to the Lyme Disease UK website, which explains in more detail about Lyme Disease and tick bite prevention.

https://lymediseaseuk.com/prevention/

Thank you,

Chloe x