I am a former Ecologist/Entomologist and had always been healthy, fit and rather outdoorsy.
May 2008 – A single tick bite on the west coast of Scotland – 13 days later I was in my local hospital unable to walk as my legs just would not bear my weight. I had photophobia, stiff neck, headache, fever, sweats, chills, flu-like feeling but without a runny nose, sore muscles and joints especially knees, dental pain and I felt awful.
Antibiotics were prescribed but low dose for 21 days. I managed to walk holding onto furniture but remained very weak and ill. Two courses of Doxycyline, three negative NHS Lyme blood tests and a negative lumbar puncture later, they referred me to a psychiatrist. I have no mental health issues, and the Psychiatrist said so. The NHS Infectious Diseases consultants and Neurologist maintained I could not have Lyme disease – they say I would have been cured by the Doxycyline. They discharged me with no further treatment, and I rapidly deteriorated, developing cognitive problems. Fortunately for me, I knew I wasn’t crazy and was seriously ill and saw 2 private Lyme specialists who said I had neurological Lyme. I had a positive private Lyme Western Blot blood test and they prescribed me IV Ceftriaxone and long-term combination antibiotics (The NHS gave me one month of this IV, under duress). I gradually got better and 19 months later was symptom- free, stopped antibiotics and had my life back.
I was fine for 2.5 years then suddenly relapsed June 2012. This time, I knew it was Lyme – the symptoms were the same – a severe flu-like illness accompanied by a very peculiar and distinctive gait, muscle pains, joint pains, headache, dizziness, nausea, night sweats, palpitations, severe fatigue, and periodic mental confusion, concentration and memory problems. Again, only very brief (1 week) antibiotics from the NHS- “Lyme doesn’t relapse” they said. Again, two negative NHS Lyme blood tests (refusal to do a Western Blot). I knew better and sought private help again, got another positive private Western Blot and neurological Lyme relapse diagnosis – this time from 3 private specialists. I am making significant progress on long term combination antibiotics. I was told by one of my Lyme doctors that if I had not continued my long term antibiotics, I would probably have ended up in a wheelchair.
I have classic Lyme symptoms after a known tick bite in an area of high incidence. I have a very good response to antibiotics, a four-week cycle (a Lyme characteristic), measurable heart problems, observable nerve damage, observable twitching muscles, two positive blood tests, 5 specialist doctors saying I have Lyme and STILL the NHS deny I have Lyme and refuse treatment. I am just thankful that I have been able to afford private treatment (we have spent our savings and been given money by family). Those who are less affluent have absolutely no hope if they get chronic Lyme – a disgusting, shameful situation.