MY PERSONAL JOURNEY WITH LYME DISEASE
By Siobhan Coleman
Lyme Disease I had never heard of. A rare disease? A foreign disease? For more than a year my health began a slow and steady decline. Many neurological symptoms were manifesting. For a time I was ignoring the signs, I battled on. Looking back now it may have been easy to diagnose, joining the dots.
I knew something was not right yet clueless to the cause. Symptoms were repeatedly dismissed. Eventually experiencing such chronic pain I could not continue, I felt so broken. I was referred to a rheumatologist, he was dismissive of my ongoing symptoms, suggestive of anxiety perhaps, cognitive behavioural therapy advised and simply sent me on my way.
A further decline in health ensued rapidly. I was struggling, physically and emotionally. I was hospitalised multiple times, developing seizure activity, speech and vision problems to add to the list of symptoms. My results were negative 3 times on the standard test for Lyme disease, little had I known how highly inaccurate this testing was. I was advised psychiatric assessment and medication as I could not be ‘labelled ‘ with any medical condition. Now frightened and panicked as to why I was so Ill and no medical professional was willing to listen or help me. The neurologist said I had ‘functional neurological disorder ‘.
I decided to take the reins of my illness and become my own advocate. I tested my blood through a specialised lab, my GP reluctant to help. My results were positive, I had Lyme disease and several co infections. I was relieved, finally I could set out a treatment plan to recovery.
My seizure activity was worsening I began experiencing palpitations, crushing headaches, insomnia, stroke like symptoms unable to verbalize. I became wheelchair and bed bound. I could no longer work or participate in life. I thought the unthinkable, this could possibly end my life. It was hard to stay positive I was crumbling inside. I was in complete shock of how I had been treated and how this disease was not recognised. I couldn’t comprehend it.
I turned to alternative medicine while awaiting a self referral to the only infectious disease doctor in Ireland. Alternative practitioners that were going to help me, both empathetic, they understood the disease. I was in a horrific state, almost disabled,non functional, a shadow of myself.
In 2017 I attended a Lyme literate doctor . He validated my illness, I had Chronic Lyme Disease. I was completely relieved , he listened to me and set out a treatment plan. After 22 doctors finally I was diagnosed after almost 2 years. I broke down in tears. He spoke of how difficult a disease to treat. By this time I resembled a person with Parkinson’s,unable to hold a pen, unable to stand unaided. He spoke of ‘Tick Borne Encephalitis’, he believed I had.
I was not alone. There were thousands of people on joining a support group. Many diagnosed with other illnesses, Motor Neuron disease, Fibromyalgia, Psychiatric Disorders, the list endless. Doctors are not educated, testing is inaccurate, awareness limited. As patients we are left to fend for ourselves paying privately in the attempt to regain our lives and our health. It is not a rare disease.
I am now progressing slowly, which I am extremely thankful for. I have always said ‘let this illness have a purpose’, I hope that sharing my story may help others to recognise the signs, know your not alone, we are ‘patients helping patients’. Recovery and remission is possible one day with many bumps in the road.