"Untreated Lyme Disease"

About: Devon, Cornwall and Isles of Scilly Royal Hampshire County Hospital

(as the patient),

I was bitten by a tick and had the characteristic rash twenty four years ago. My GP dismissed it. After being ill with all sorts of things for fifteen years I discovered Lyme disease on the Internet and had tests sent to America which came back positive. I had private treatment of antibiotics for sixteen months and felt a lot better. I returned to work.

After a few years I started to deteriorate again and was referred to the Lyme clinic which opened at Winchester hospital. The doctor there initially rubbished my tests results but then agreed that I had chronic Lyme disease and treated me with antibiotics for a month. After a follow up over the phone when I told them I was not much better they decided I must have been cured and refused to prescribe any more antibiotics. A year later I was bitten again and my GP would only prescribe ten days antibiotics despite my health deteriorating further.

I am now very unwell, I have had to virtually stop working, I had numerous strange symptoms and poor blood results, my ESR and CRP went very high straight after the tick bite but even my rheumatologist says that is not related. I can see that all my recent problems dated from the bite but no one else agrees and I am tested for all sorts of spurious things but the possibility of Lyme disease or a co infection is ignored. I feel I have been left on the scrap heap.

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Responses

Response from Hampshire Hospitals NHS Foundation Trust

I am sorry to hear about your situation. Please contact our customer services team on 01256 486766 or customercare@hhft.nhs.uk so we can investigate this.

We do not provide a specialist Lyme disease service, so you might also like to contact Public Health England, who are responsible for advice to patients regarding this. This is available on NHS Choices (http://www.nhs.uk/Conditions/Lyme-disease/Pages/Introduction.aspx), while further support and advice is also available from Lyme Disease Action (http://www.lymediseaseaction.org.uk/).

Mary Edwards, chief executive

Mary.edwards@hhft.nhs.uk

Update posted by KendalC (the patient)

I think this response is largely unhelpful as I know that the Lyme clinic at Winchester closed down within a few months of opening due to funding issues. There is no point whatsoever contacting Hamshire Hospital about a service which has closed. As for PHE it is their lack of knowledge which leaves patients like me stranded. Their advice is to to ignore peer reviewed information from the world over regarding Lyme Disease.

Overall this reply is very unhelpful as it repeats the lack of care I have received from the NHS over the last 24 years. It is just words and does not give me any help or indeed hope for the future.