For those of you who don’t already know! I am not having Lyme disease treatment in the U.K. This was a decision I made soon after my diagnosis and realising the horrifying truth about the care of people living with what can be an incredibly debilitating chronic illness. A tick bite can be life changing. For those who are not diagnosed in the early stages and therefore treatment is delayed, Lyme disease can begin to destroy different parts of the body. This makes it extremely complicated and difficult to treat. It can trigger numerous physical and mental conditions. It is a CLEVER bacteria and can make people VERY sick. To make matters worse, there are huge controversies in the Lyme disease medical world when it comes to diagnosis and treatment. Tests are unreliable. Treatment can be unsuccessful. I won’t go into all of the problems here, but please visit the John Caudwell page or ILADs to understand why the system fails so many patients with Lyme Disease. You can also read this to find out more about chronic lyme disease.
When I was diagnosed I found myself to be in the heart of Lyme disease drs which of course worked to my advantage. One particular dr stood out by a million miles. He runs a Lyme disease clinic in New York State. After multiple discussions with him I just knew he was the one to help me! After taking my medical history and carrying out more tests it was clear that I have had lyme disease for a very long time. It has now caused huge amounts of damage to my body. Not just my ear. My thyroid, digestion, autonomic system, circulation, joints and immune system. The list is endless. With my body being so fragile and with me still relying on a PICC line for hydration, I felt it was so important I made a decision about where to get the BEST possible treatment. No messing about. I needed a dr who was used to complex patients like me. Patients who have multiple issues that have been triggered by Lyme disease. With there being so many treatments out there I felt that going to one of the well known Lyme drs who I trusted was my very best chance of getting better.
My current care in the U.K. is at UCLH in London. Treatment options for my gastroparesis has run out (apart from surgery) and there is little more they can do for me. They have unraveled some of my very complex conditions which I am so grateful for but they are failing to see what is actually causing them. This is why I took matters into my own hands and how I eventually ended up with my Lyme disease diagnosis. I am currently getting infections all the time and after having sepsis twice in the past two years both me and my family feel that this needs to be sorted quickly.
Chronic lyme disease treatment is no walk in the park and it can take months or years to get back to normal (I’m still unsure if there’s actually a cure). BUT with successful treatment patients can live a normal life again! People can literally go from being in a wheelchair to walking….to running. This is my chance and my hope of finally being able to get my quality of life back. I have been through so many traumatic procedures and surgeries yet I am still stuck and unable to move forward. I don’t like to moan because I know things could be worse, but there is only so long I can put up with how ill I still am. I am trapped in a body that doesn’t function on so many different levels. I live each day dizzy, exhausted and in pain.I still have little independence but I will give absolutely my all to get it back again. Going from living independently away at Uni to being practically housebound and relying on my parents for everything is almost to difficult to think about. The thought of simply being able to go out the house on my own, go for a walk, a swim, a coffee (or gin) to sit and have a meal with my family … literally sends shivers down my spine! I live in hope and always stay focused on the dreams I’ve always had. To travel the world, to be a nurse and make a difference to people lives. I couldn’t be more ready to start living my life again. I am so lucky to be given another shot at getting better. This eye opening experience continues to make me realise what really matters in life. These experiences make you stronger. You see how much good there is in the world and you become grateful for the smallest of things. You realise how lucky you are to have the love and support of your family and friends. I owe my parents the absolute world for what they have given up to look after me. Our health is truly everything. Make the most of it !✌
To everyone who has helped make this trip happen – THANK YOU.
7th PICC line in two years and what I hope is the last !!