I am currently 22 years old and live in Bristol. Before I became unwell, I was a very average teenager who loved going out, walking, art and philosophy. At the age of 18 I developed a flu and a rash on my chest that was dismissed as ringworm by my doctor. I ignored my symptoms and it eventually went away. Little did I know this was the classic start of Lyme disease; if I had the proper treatment at this stage I would not be as sick as I am today.
Over the last 4 years I have been living with Lyme disease, which has caused me to now drop out of my degree in textile design and move back to my home town. I am unable to look after myself independently due to the chronic pain, fatigue and body tremors I experience; I cannot walk very far, nor can I do basic things such as cooking or cleaning without crashing. My life is completely different.
There is a real lack of knowledge about Lyme disease in the UK. Essentially, if you catch it early then a short course of antibiotics is enough. However, if missed at this stage, as in my case, the illness can progress and become far more complex. Currently there is no knowledge on how to fully treat the condition, having late-stage Lyme can put you in a medical grey area. My doctors are unsure how they can help me and there are no Lyme specialists in the NHS.
My condition is complex. I need to see a Lyme specialist who knows how to treat and manage my condition. I have lost years of my life and refuse to lose any more. There is a specialist clinic in Washington DC that I am aiming to receive treatment from.
In my first year of university I was experiencing exhaustion, migraines, shakiness and nausea. I carried on as well as I could, until my thyroid was affected, and I was diagnosed with Hashimotos disease and hypothyroidism. In my second year my body simply crashed; my immune system broke down and a test revealed chronic immunosuppression. I developed chronic pain, tremors, muscle spasms, double vision and heart palpitations. I was housebound and then bedbound. Doctors labelled this as M.E and Fibromyalgia. The simplest of tasks became insurmountable; showering, cooking, reading. Somehow, I still completed my second-year studies.
I had my first seizure episode the following summer while seeing the cure in Hyde Park (which is very iconic I know, not often you see a goth looking like they’re being exorcised). I had full body convulsions that lasted an hour. The episodes continued; I had another in Paddington station a month later which left me paralysed from the waist down for a week. None of my doctors could work out what was causing it. Lyme seizures can look a lot like regular seizures, or can be localised to my stomach, chest, arms or legs.
I went to my first lecture of my final year in a wheelchair and managed half a day. I had to move back home to have the support of my family. At this point, my seizure episodes were daily, if not multiple times a day. My condition was deteriorating rapidly, and still no doctor could pinpoint the issue. I was determined to find out what was wrong with me.
We finally got our answer: late stage neurological Lyme disease (Neuroborreliosis). This happens when Lyme goes unnoticed for long enough for it to begin attacking your central nervous system.
After some conventional treatment for Lyme my seizures slowly began to stop. My pain lessened and I felt generally less dizzy and unsteady. With this, I regained some independence.
The NHS discharged me from the infectious diseases team due to the signs of improvement and stopped my treatment. Within two weeks, my seizures came back and were lasting up to 7 hours. Nothing from the hospital was working and I was blocked from receiving more treatment because I “should have been cured”.
Eventually, my doctor restarted my treatment and the cycle repeated itself: gaining back some functionality, but experiencing a relapse when treatment was withdrawn. The treatment designed for use is created for the early stages of Lyme, not 3 years after contraction, meaning it would suppress my symptoms but not treat the disease. The ongoing treatment and oversight I need is not available in the UK as they do not recognise it as a chronic condition yet. I need the care of Lyme disease specialists if I have any chance of beating it.
My goal is to raise funds to access treatment in the US, where a specialist Lyme clinic in Washington DC can help me. I appreciate you taking the time to read my story and any support you can give to help me. If you are not in the position to donate, a simple share could help this reach someone who is. Thank you so much
I will post updates on my social media (which I have neglected since becoming ill) if you want to follow my journey.
My instagram is @smallsadginger
You can find more information about Lyme disease below, please be tick aware!
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