I was bitten by a bug I didn't see in the summer of 2011, a few days later a rash appeared around it which I now know was the Lyme disease diagnostic Erythema Migrans rash. My GP at the time prescribed me a plaster for it. For the next year I was largely ok, although my asthma seemed to be getting worse and in summer 2012 I had a course of oral steroids for my asthma. A couple of weeks later I woke up one day completely unable to stand up, having heart palpitations and was extremely disorientated. For the next few months I was tested for almost everything, I saw several doctors but the only thing I was told was "post-viral fatigue", despite not having a virus prior to my illness. I began to search the internet and found Lyme Disease, everything suddenly added up - including the fact that the site of my bite a year previously had become inflamed when I became ill. I asked for an NHS test but it was negative. And that was that, no treatment, no further investigations, post-viral fatigue was my diagnosis and I was signed off work for 2 months. I now know that the reason for my negative test was almost certainly the steroids (inhaled and oral) I had taken for my asthma suppressing antibody production. Refusing to give up, I got a private test from Infectolab in Germany, one which does not depend on antibody production and is used for diagnosing TB (Elispot-LTT). It came back positive and in the summer of 2013 I began treatment on antibiotics. It is now February 2014 and I am almost completely back to normal, my fatigue, pain, heart palpitations and brain fog are all gone. If I had believed the NHS test I have no doubt I would still be in a living hell and have lost my job as a research scientist. My positive test allowed me to get the treatment that has saved me.

Sophie, 23, Manchester - Founder of LymeAid UK

I believe private testing was a crucial part of my Lyme disease diagnosis process as I went undiagnosed for 12 years. During that time I was misdiagnosed with numerous illnesses including depression and chronic fatigue syndrome. I did have an ELISA test for Lyme disease when I was living abroad but it was negative so I thought it had been ruled out. My health continued to deteriorate until my parents were desperate and didn't know what to do with me anymore as I started having seizures and I was getting no help from the NHS. They took me to see a doctor in America who, after taking a detailed history, said that he thought I was suffering from chronic Lyme disease. I was sceptical having had a previous negative test but he ran some private testing with Igenex and the results came back positive for Lyme disease. Private testing gave me the confidence to proceed with my antibiotic treatment as I was able to see blood test evidence for an infection. My results were used in conjunction with a clinical diagnosis. So many of the issues surrounding Lyme disease such as various co-infections require clinical diagnoses and so having the initial private positive blood test enabled me to put my trust in my American doctor that I was finally on the right track.

Anonymous

I had a private Igenex test, the Western Blot was indeterminate but amazingly I had a positive PCR. As this is a very specific test, my GP had no problems trusting the result and prescribing antibiotics.

Anonymous

 
Sophie's bulls-eye rash, which is diagnostic for Lyme and should have allowed early treatment, was dismissed by her GP.