"Lyme Disease"

About: Redbridge PCT

(as the patient),

I started having vague flu like symptoms in May 2011 and was ill for 3 months. Various doctors put my illness down to 'a virus' and left me to it.

In December 2011 I got much worse and was completely incapacitated. I had routine blood tests showing nothing abnormal and was told I just had a cold. My symptoms had progressed to include migraines, vertigo, numbness, tingles, heart palpitations, nausea, vomiting, the list goes on and on. I was too weak to lift a metal fork.

I found information on lyme disease online and my GP did the standard ELISA anti body test. It was equivocal and the retest negative. She ignored me presenting her with studies that showed the inaccuracy of the test. I went to a private clinic in July 2012 and had a more accurate test, with my blood sent to the leading world laboratory for lyme. It was positive and with my textbook symptoms it was an open and shut case.

By this point I'd had it for nearly 18 months and it was considered 'late stage' or 'chronic' and from my research I knew this meant a simple 4 week course of antibiotics wouldn't be sufficient, and this is what the NHS offers.

My partner and I live in shared accommodation to pay for private treatment. I've been on it for 4 months (3 months after the NHS would've considered me cured) and I've made huge improvements and am continuing to improve. Just this past week I went out in the evening for the first time in over a year.

The NHS needs address the fundamental flaws in lyme disease diagnostic testing as well as it's treatment guidelines.

So many people are misdiagnosed and it's probably costing the NHS far more overall than if they just treated it properly in the first place.

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