"Lyme disease misdiagnosis"

About: Suffolk PCT

(as the patient),

Dear PO in August 2010 I was bitten by something that produced a circular (bull’s eye) rash on my hip, which I later concluded, after much research on the internet, was the erythema migrans associated with Lyme disease. If I remember, it was a few days before this, (in fact, the day of the world cup) that I came down with awful flu-like symptoms, but without a cough or sore throat. After exhaustive research I was convinced I had Lyme disease. I made an emergency appointment the next day at the local medical centre here in Beccles, Suffolk.

I told the doctor that I thought I had contracted Lyme. She looked at the rash (which was accompanied by large red blotches at the top of both my legs) and said, yes, it looks like the erythema... (she couldn’t remember the migrans bit). She then said to my astonishment that she didn’t think I have Lymes disease, just a nasty bite. I then pointed out the large blotches at the top of both my legs and she said this was just where my trousers were pressing. She gave me a course of Amoxycillin and some anti-histamine. I can’t remember if this was for a week or ten days.

I finished the course, the rash disappeared and I kind of felt normal-ish, but really not quite right. In fact, every couple of weeks or so I would feel deeply low in spirit, completely lethargic, and not at all well. I was convinced the Lyme hadn’t cleared up. I made another appointment some months later, this time with my regular doctor. I showed him photos of the rash I had taken at the time. He too muttered the words erythema migrans but would not commit to saying I had Lyme disease. What is/was it then? I asked him. ‘We shall never know’ came his reply and then he said, ‘these things take a long time to clear up’. He offered me neither repeat treatment nor a blood test.

Approximately nine months later (though feeling better but still getting debilitating bouts of low spirits and what feels like incurable tiredness) my regular doctor retires and a young, enthusiastic woman doctor, replaces him. I decide to take my case to her. Armed with my photos, I explained the scenario. She more or less confirmed that the images were pretty clearly those of...well, neither she could remember exactly what it was called and had to dig deep in a textbook to name erythema migrans.

Thankfully, she asked me to take a blood test for Borreliosis. About two weeks after this first appointment I received a phone call from the surgery asking me to re-take the test. There was no explanation why. In a follow-up appointment, the doctor said that the results had come through from the first test and that they had found antibodies to Borreliosis. She almost muttered the fact that I was now suffering from Chronic Lymes disease.

I am now waiting for the results of the second test, which will be explained, at my next appointment in mid June 2011. I guess this will be a confirmation and discussion on where to go next. I think that it is now obvious that the initial (mis)diagnosis resulted in inadequate treatment which brings me to where I am now.

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