Lyme Disease I had never heard of. A rare disease possibly? A foreign disease? A zoonotic risk? I certainly had not seen a tick or develop the classic ‘bulls eye rash’. For more than a year my health began a slow and steady decline. Many neurological symptoms were manifesting including nausea, dizziness, joint pains, painful red eyes, noise and sound sensitivities, fatigue. For a time I was ignoring the signs, maybe this is what 40 feels like? Maybe 20 years working as a veterinary nurse had indeed caught up. I battled on; my body felt in turmoil. Looking back now it may have been easy to diagnose, joining the dots.
I knew something was not right, a gut instinct, yet clueless to the cause. I had regular visits to my G.P, I always had a healthy lifestyle, never any serious illness. My symptoms were repeatedly dismissed. All routine tests performed were normal. Eventually experiencing chronic hip pain, I simply could not continue, my body felt so broken, I felt broken. I was diagnosed with early degenerative osteoarthritis with bilateral trochanteric bursitis, referred to a rheumatologist where on examination I was injected with steroids in both bursa. He was dismissive of my on-going symptoms, suggestive of anxiety perhaps, cognitive behavioural therapy advised and simply sent me on my way.
A further decline in health ensued, chronic pain took hold, 3 separate visits to A&E, dismissed in chronic hip pain with no explanation or further diagnostics offered just pain relief. I felt almost suicidal with such severe pain. The strongest of pain relief ineffective. At this point I was struggling both physically and emotionally. I was later hospitalised multiple times on order of my GP, developing seizure activity, speech, and vision problems to add to the now growing list of symptoms. On request I asked to be tested with the standard Elisa test for Lyme disease. My results were negative 3 times in total, 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.
Chronic fatigue syndrome, pain disorder, fibromyalgia, copper toxicity was mentioned but not diagnosed. After researching, almost loosing ability to read, I knew I may be symptomatic of Lyme disease, 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 FND ‘functional neurological disorder ‘, a diagnosis I was not willing to accept. Referred to a neurophyscologist for therapy sessions.
I decided to take the reins of my illness and attempt to navigate myself, become my own advocate. I tested my blood through a German lab specialising in tick borne diseases, my GP reluctant to help, another battle. Foreign Lab reports that were not recognised by Irish doctors. My results were positive, I had Lyme disease, several co infections and viruses all transmitted by a tick bite. I was relieved, finally after several months I could set out a treatment plan to recovery.
My seizure activity was worsening I began experiencing palpitations, crushing headaches, cognitive issues, fasciculation’s, insomnia, tingling, buzzing, ‘drop attacks’ where I would fall suddenly to the floor, stroke like symptoms unable to verbalize. I became wheelchair and bedbound. I could no longer work or participate in life. So sick 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 could not comprehend it.
I turned to alternative medicine while awaiting a self-referral to the only infectious disease doctor that treats Lyme disease patients in Ireland. I attended a Lyme literate herbalist who gave me hope of recovery prescribing herbal protocols then Bio magnetic Pair Therapy, a therapy effective at treating Lyme disease non-invasively. Both practitioners were going to help and support me, both empathetic, they listened and understood the disease. I was in a horrific state, almost disabled, non-functional, a shadow of myself.
In October 2017 I attended a Lyme literate doctor. He indeed validated my illness, I had Chronic Lyme Disease. I was completely relieved, he listened to me and set out a treatment plan with long term antibiotics and supplementation. After 22 doctors finally I was officially diagnosed after almost 2 years. I broke down in tears. He spoke of how difficult a disease to treat, a stealth bacteria, a clever bacteria, evading both the immune system and potentially antibiotic protocols. By this time, I resembled a person with Parkinson’s with whole body tremors, unable to hold a pen, unable to stand unaided. He spoke also of ‘Tick Borne encephalitis’ which he believed I had, the Lyme disease was attacking my brain and central nervous system.
I was in for the battle of my life, certainly testing stamina and strength of any character. I am extremely blessed to have such great support in my sister and my husband who became my carers, hauling me through the hard times. We were in this together, without my husband’s support I dread to think, friends quietly faded away. It has been the roughest times of both our lives. A journey no human being should have to endure. Lyme disease literally derailed my life, horrifying to live through.
I was not alone. There were thousands of people on joining a support group, Tick Talk Ireland. Many others suffering misdiagnosed. Many diagnosed with other illnesses, Motor Neuron disease, MS, Fibromyalgia, Rheumatoid Arthritis, Lupus or Psychiatric Disorders, the list of conditions endless. Doctors are not educated on Lyme disease, testing is inaccurate, guidelines outdated, 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; Ireland has Lyme disease and its very much on the increase. I am now progressing slowly, which I am extremely thankful for, with a combination of treatments. I have always said ‘let this illness have a purpose’, I hope that sharing my story may help others to recognise the signs, know you’re not alone, we are ‘patients helping patients’. Recovery and remission is possible one day with many bumps in the road.
Useful links and further reading:
Siobhan Coleman, a native of Listowel, Co.Kerry. A qualified veterinary nurse of over 20 years experience, a much loved career. Previous Senior Head nurse of two equine hospitals in County Kildare. Keen interest in the equine field and animal welfare.Currently studying in biomagnetic pair therapy to become a practitioner. Diagnosed with chronic Lyme disease in 2017 after several medical misdiagnosis. Severely neurologically affected. Treatment route included long term antibiotics, herbals, supplements and biomagnetic pair therapy.
Passionate about lyme disease awareness among veterinary professionals and patient advocacy. Written articles highlighting lyme disease in veterinary journals and of my personal journey with the disease.