Lyme Disease: A Cautionary Tale

I live in Aberdeen, I'm a keen hillwalker, climber and professional Ecologist, and contracted Lyme Disease in May 2008. I had heard of Lyme disease and had considered the risk of contracting it to be low, and it to be easily treatable. I was wrong. I have had my life turned upside down. I have spent many thousands of pounds on treatment and encountered stunning levels of ignorance and arrogance from the medical professionals involved. This is my story.

I caught Lyme from a single tick bite on the Isle of Rum. Eleven days later, I felt quite ill at work - weirdly sore knees, stomach pains, headache, stiff neck, swollen glands, aching muscles and the light hurt my eyes. It was a bit like an odd flu. I went home from work, and upon recounting the tick bite, was told by my GP to go to hospital the next day. I was admitted immediately. I couldn't walk, was drenched in sweat, hot and looking very ill. When I told them about the tick bite they suspected Lyme disease in the nervous system (Neuroborreliosis) and straight away put me on oral antibiotics. After 2 nights stay, a lumbar puncture and blood tests, they sent me home with 21 days of antibiotic tablets.

I spent the next month very weak, unable to walk properly, with migrating pain in muscles and joints, continuous headaches, dizziness, nausea, rib pain and bad fatigue. I was taken back into hospital for more tests, which included and MRI scan, a nerve conduction test on my legs, a neurological examination, a lumbar puncture and further blood tests. The tests were inconclusive and I was told that I either had post-viral fatigue or was mad. I was taken off the antibiotics there and then, and discharged with no more hope of treatment.

Shocked and upset, I was referred to a psychiatrist who concluded that I had no psychological issues at all. Off the antibiotics, I went downhill fast. I needed to use a stick or hold onto another person to get about, I could no longer stand upright without falling over. The symptoms were at their peak, and most frightening of all, I developed cognitive problems. I am normally a near touch typist, but I could only type very slowly, with one finger. I couldn’t hold a proper conversation, I forgot the names for for everyday things and had a thick "brain fog". I had to stop driving because I lacked concentration. I couldn't add two numbers together.

Desperate for some help, I went to see a private Lyme specialist in England. I was tested straight away and diagnosed with Lyme disease. He told me the bacteria had entered my brain and I needed urgent intravenous antibiotics. That would be expensive, £13,000 to be precise, so he would write to my local hospital to try to get me treated on the NHS. After some argument, the NHS consultant agreed to provide me with 4-weeks intravenous antibiotics and I began to get better. I then had to pay privately for the rest of the necessary treatment a further 8 weeks of intravenous and months of oral antibiotics. I've spent over £10,000 to date, but I'm slowly getting better.

The Lyme bacteria is a tough cookie, and hard to completely eradicate. The numbers of cases are far higher than official statistics suggest. The NHS guidelines are deeply flawed. If I had listened to the NHS registrar, I would probably be severely (and possibly irreversibly) disabled by now. People are bedridden, housebound and wheelchair bound by this terrible disease. Treated early with an appropriate dose of an appropriate antibiotic, the chances of a swift recovery are good. But accurate and early diagnosis is rare.

If I had listened to the NHS registrar, I would probably be severely (and possibly irreversibly) disabled by now.

I won't let this experience put me off enjoying the Scottish countryside. However, I'm far more cautious. I could get Lyme again. The prevalence of infected ticks is between 1 and 14% in Scotland. Most people get bitten occasionally, it's almost unavoidable. But please, look out for strange symptoms like bulls-eye rashes (but these are only seen in about 50% of cases), do your research and take them seriously. Enjoy the great Scottish countryside, but do so with care. Further info on Lyme Disease Action and BADA-UK.

Nicola Seal

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