"Lyme Disease and Aberdeen Royal Infirmary"

About: Aberdeen Royal Infirmary / Infectious Diseases

(as the patient),

I caught lyme disease from a single tick bite on the west coast of Scotland in 2008. Prior to getting Lyme I was a fit, 30 something hillwalker with no history of serious illness.

I was referred to the Aberdeen Royal Infirmary by my GP when, 11 days after the bite, I came down with a flu-like illness that he thought could have been Lyme disease. By the time I arrived at the ARI, I was a sweaty mess, barely able to walk (my legs would not hold my weight), and had muscle pains and symptoms suggestive of meningitis. They admitted me, did blood tests and gave me antibiotics, and thought it could have been lyme.

When the blood tests came back negative, they were not convinced I had Lyme. I was improving on the antibiotics, but I did some research and realised they had me on a very low dose, and they gave me a higher dose. After a few weeks, I slowly improved, but still felt tired all the time and had problems walking, my legs would just plonk down (but not all the time, just some days, which was weird).

A couple of days before the antibotics were due to end, I relapsed and found myself with severe difficulties walking again. The blood tests were still negative, but I felt awful and could barely walk, clearly something was wrong. They admitted me again and did lots more tests. All were negative, but the MRI showed hyperintensities which could be suggestive of neurological lyme and the doctor who tested my nerves said that there was something wrong with the nerve coming from my spinal column to my legs, but I felt that the staff looking after me ignored this. I had had a lumbar puncture but it had gone wrong and I was left with a crushing postdural headache for 6 days, so bad I was sick. I felt that this was not seen as important, and the doctor who did the lumbar puncture would not come to see me, despite repeated requests.

I was discharged with a diagnosis of 'post viral fatigue' or 'its a software problem' and referred to a psychologist. I was really upset, I knew I was just not making this up, had no history of psychological illness, and had been taken off the antibiotics and basically felt abandoned by the doctors.

Off the drugs, I went downhill fast, I began to have problems with thinking and mental processing, I got clumsy, knocking things over a lot. I forgot my PIN number, names for things and could not hold a decent conversation as forgot what I was talking about all the time. I had shooting muscle pains, pains in my jaw, sore joints, swollen glands, constant headache, nausea and dizziness, numb patches on my shins and thigh, and could not touch my finger to my nose on one side. I slept much of the day, but could not sleep at night, and often had to crawl round the house as I could not walk at all some days. I had to lift the kettle with both hands as I was so weak.

I went to the psychologist appointment, who came to the conclusion I was not mentally ill, which I knew, but it was nice to have it on paper. I decided to go private, got private blood tests and two private specialist doctors told me in no uncertain terms that, based on my history, symptoms, positive private blood test and response to antibiotics, that I had Lyme disease. They recommended a 3 month course of intravenous antibiotics. The ARI argued that there was 'no evidence I had Lyme disease' but despite this gave me 1 month IV antibiotics. I had to pay for the remaining 2 months privately, and then had 13 months private oral antibiotics of various kinds. The ARI warned my GP off treating me, saying that it would be treating inappropriately, so I had to pay for everything myself, which cost many thousands.

On the treatment, I slowly got better, but continued to have flare ups every 4 weeks. If I stopped the antibiotics, I got ill again, so I remained on them until I had been symptom free for two months.

I have been free of symptoms for two years now and am completely recovered, but feel my treatment at the ARI was poor to say the least and their knowledge of Lyme seemed to me to be severely lacking.

My private specialist told me that, in their opinion, had I not had appropriate treatment, I could have been left in a wheelchair.

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Response from Anne Marie Walsh, Clinical Quality Facilitator, Quality, Governance and Risk Unit, NHS Grampian

I can see you shared your experience on Patient Opinion some time ago. I am sorry that your experience was not a positive one. I can see you were having a distressing and frustrating time with your health. I pleased to hear that life has improved for you and that you have fully recovered.

We have only recently started working with Patient Opinion so please accept our apologies in not getting back to you at the time. If you have any further feedback about the experience you desciribed please get in touch.

We are keen to listen to stories of patients and carers and, going forward, we plan to respond quickly to all stories we are alerted to from now on.

Best wishes

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