"Treatment for Lyme disease"

About: Aberdeen Royal Infirmary

(as the patient),

I was bitten by a tick and got the classic halo rash around the bite site. I went to my doctor who gave me a steroid cream for the rash. I was very ill for over a year with frequent trips to the doctor.

I heard a programme on the radio about Lyme so I suggested that the doctor tested me for this. I was positive and eventually ( another 2 months) I was treated with 3 weeks oral anti-biotics. By now I was well into stage 2 with neurological symptoms as well as all the other Lyme effect.

I became better for a short while and then deteriorated again. When I suggested to my doctor that the Lyme was back they poo-pooed the idea. I think I should have got IV antibiotics etc for the second stage infection.

I continue to be ill and it is progressive and the neurological decline is scary. My medical history suggests Chronic Lyme, however here in the far North of Scotland diagnosis appears to be very difficult and I believe I need to go privately down to Hemel Hempstead. I am not well enough to deal with the stress of managing the travel and regime of diagnosis and treatment and it will cost me a lot of money for the travel alone, especially as I am losing my job. I feel that the doctors I've seen here don't know much about the condition and do not know how to deal with it, nor do they seem able to refer anyone in the right direction.

I believe if Aberdeen Royal Infirmary had advised my doctor correctly for stage two I think I would be well today, still working and not be a burden on society. I would not be so ill and have lost 6 years of my life ( so far) if my GP had known the symptoms and how to treat it correctly straight away.

I have since found several other folk in the county who have been infected with Lyme, some have been treated others not. I was bitten by one tick on my one trip down to Perthshire...there must be many more people with the condition, untreated who are suffering as much as myself.

I wonder why can we not be tested and treated reliably in Scotland and why is Aberdeen Royal infirmary sending samples down to Southampton for testing instead of to Inverness where I understand there is a lab with an excellent reputation for Lyme testing, and as a result it takes a very long time for the GP's to get the correct treatment to the patient.

My life is no longer worth living...this degenerating illness, losing my job, coping with everyday life, the benefit system and having to deal with the medics I have seen who don't seem to be bothered, is hell on earth.

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Responses

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 sincerely hope that life has improved for you in the 6 months since you posted your story on Patient Opinion.

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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