My journey with Lyme disease did not start with answers, it started with confusion, fear, and a body that slowly began to feel like it was no longer my own.
Lyme disease leads to urgent hospital care
Back in December, things reached a point where I had no choice but to seek urgent hospital care. My symptoms had escalated so severely that I could no longer manage at home. That period was frightening and overwhelming, and it marked the beginning of 10 days in hospital and a much deeper and more complex medical journey than I ever imagined I would be on.
Severe late-stage Lyme symptoms
What began as symptoms I tried to push through gradually became impossible to ignore. I lost the ability to walk, losing my balance and not having the strength in my legs, lost sensation in my right side of my face, and the vision in my eye. At first, in A&E they seriously thought it was a stroke.
Over time, symptoms have developed into a wide range of chronic, daily struggles. I experience constant pain in my joints, with my fingers, knuckles, and elbows often locking or becoming stiff. There are times my hands feel weak and unstable, even buckling backwards. I have tingling and electric shock sensations running through my fingers and palms, alongside burning pain in my hips that can feel like a hot poker.
My knees have become increasingly noisy and unstable, and the soles of my feet are often sore and tender. Mornings are particularly difficult, my whole body feels locked and stiff, as if it takes everything just to get moving again. The fatigue is relentless, and some days I am completely bedbound.
My mobility has been significantly affected. Walking is often a challenge, and I’ve had to rely on crutches. Most weeks, I rarely leave the house. This is a stark contrast to the life I once lived; a full, active lifestyle filled with horses, the gym, and swimming. Losing that part of my life has been incredibly difficult to come to terms with.
Slow progress through the healthcare system
The journey through the healthcare system has been long and, at times, exhausting. Since my hospital admission in December, I have undergone numerous appointments and investigations in search of answers and the right support. I am currently under an infectious diseases consultant at Royal Stoke who has now referred me to the University of Liverpool Hospital for a second opinion. I am hopeful this will bring fresh insight and a clearer path forward.
Private care for Lyme disease brings hope
Alongside this, I have taken further steps by sending my results to a private Lyme doctor, and I have now secured an appointment with him in June. I’m holding onto hope that these next stages may finally help connect the dots and lead me toward effective treatment.
Mentally, this has been one of the hardest battles I’ve ever faced. Chronic illness is isolating in a way that’s difficult to fully explain. The world continues moving while you are fighting just to get through each day. It has taken a significant toll on my mental health, and at times it has felt incredibly lonely.
But despite everything, the setbacks, the slow progress, the days where it feels like I am going backwards, I am still here and I am still fighting. I refuse to give up on getting my life back.
This journey is far from over, but I will keep pushing forward until I find answers, relief, and a way back to the life I once knew.
source: https://lymediseaseuk.com/my-lyme-story-linzi-booth/
(C) Lyme Borreliosis Foundation
