"untreated lymes "

About: NHS Ayrshire & Arran

(as the patient),

im totally unhappy with nhs. it took 3years to get diagnosis from nhs of me, cfs when I actually had lymes 3 positive blood. I was also told they were negative and I didnt find out my positives were overlooked by gps and hospital. im now an invalid use bath aids and need help to bath. I suffer muscle weakness in legs and arms use chair only get from bed to toilet, suffer painful shooting pains in all muscles and in my joints, sensory paresthesia burning numb patches in my muscles, brain fatigue. im in bed more than im up, chest pains irregular rythmn due to lymes. these main symptoms have ruined my life.

This illness was of gradual onset. Took a reducing of mobility year by year which was watched by nhs. im 6 years in to this I was not gave a spinal tap despite my lose of mobility. iv had tasts mri etc infectious disease expert suspected chronic lymes but did no further tests. I was diasgnosed with me, cfe before they eventually found theyd overlooked positive lab results years later.

so I need to find a infectious disease expert to give me a spinal tap privately and I want longterm antibiotics. If you are a GP and see this can you help me? Can anyone advise me of a infection disease expert in Scotland.

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Response from Craig White, Assistant Director, Nurse Directorate, NHS Ayrshire and Arran

picture of Craig White

Dear Corky69

Many thanks for using Patient Opinion to share your experiences. I was sorry to read of your ongoing symptoms and note your current distress, concerns and questions. I have asked one of our senior medical management staff if he would be able to provide you with information on how best to support you with responses and advice.

It would be very helpful if you could make contact with Karen Sangster, Head of Governance Support at Karen.Sangster@aapct.scot.nhs.uk so that we can communicate with you directly in the first instance, possibly then summarising for the Patient Opinion site how we have supported you with the issues you raised? This would mean that anyone else using the site to identify stories related to their experience could benefit from any useful information or learning that we identify through our discussions with you.

I hope that this initial response is helpful,

Best wishes

Professor Craig A. White

Assistant Director, Healthcare Governance & Assurance

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