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Nicola’s Story

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– Where bitten: Isle of Rhum, West coast of Scotland 

– Where live: Aberdeenshire

– Occupation: Previously ecologist – now full time mum. 

– Initial symptoms: flu like illness, sore knees,  stomach pain then profuse sweating, heart conduction problems, meningitis symptoms and inability to walk. 

After initial symptoms, they progressed to cognitive problems, severe insomnia, night sweats, dizziness, nausea, headache, numbness, jaw and dental pain, shooting pains in limbs and digits, pain in joints particularly hips, gluten intolerance, very poor stamina and strength (couldn’t hold a kettle or chop vegetables, couldn’t walk around a supermarket), noise and light sensitivity, poor coordination. 

– How long to be diagnosed? Self diagnosed straight away but NHS tests negative so NHS diagnosis withdrawn. Privately diagnosed several months after tick bite.

– Any problems getting diagnosed: 5 negative NHS Elisa’s. Refusal of NHS to consider seronegative or chronic disease. 

– What symptoms do you have?. Intermittent inability to walk or very weakened legs and unsteady gait, muscle weakness, memory problems but mostly in remission. 

– How has it affected your life? Approx 60k spent on treatment, can’t work, socially isolated, many years spent suffering before recovering with private treatment. 

– Have you had any treatment? 8 years of private combination antibiotics and anti malarials. 

– How are you now? Mostly symptom free but with flare ups/relapses.