I have been reading your group messages for a while and thought I would tell my story. Sorry if it is rather long - hopefully of some interest though.
In July 2003, I visited the Aland Islands of S. Finland and developed a ?bull?s eye? rash on my leg. I happened to take a photo of it, just because I though it was interesting. A month later I happened to be in Prague and came across some info alerti people to the risk of Lyme disease after a tick bite. Had I not been to Prague, I would probably still be in the dark about it all.
I have since found out that the Aland islands have one of the highest rates of LD in the world. (149 per 100,000 per year) (Maarit - the General Hospital there, and the University at Turku, have published some articles on it - in the Scandinavian Journ of Infectious Diseases. That was about 10 years ago - but they may well have some continuing expertise, from familiarity with the condition).
Coming back to north east UK, I saw my GP. I was referred to an Infectious Diseases consultant who, to cut a long story short, was not much use - he said ?100% sure you don?t have it, because the blood tests (ELISA) are negative? and he ignored the info I gave to him (from EUCALB) that said I had adequate clinical evidence, (including the photo), to make a diagnosis, and to treat me.
On my strong insistence he reluctantly referred me for a second opinion, to an excellent Consultant Rheumatologist who acknowledged that he knows little about LD, but he responded to me! He sought ?expert opinion? from London, who referred him on the Dr O?C in Southampton. The Rheumatologist tracked down my blood samples from 6 and 8 weeks post rash (which had already been tested negative by the ELISA test), and he sent them with another sample (26 weeks post rash) to Dr O?C.
The Rheumatologist prescribed Doxycycline, while we waited for the results.
Dr O?C apparently did a range of commercial ELISA tests on the samples - all were negative. But she also did an immunoblot - which was weakly POSITIVE for Borrelia Afzelii. (The same species that I had already predicted from an article from the Aland Island Hospital, associating the characteristics of the rash with the species of borrelia) and she recommended treatment (Doxy).
I suspect that masses of people who are negative for ELISA, never receive the immunoblot test. If that had happened to me I would still ?officially? have a question mark over my diagnosis - in the view of anyone who trusts test results more than clinic evidence.
My symptoms (mostly hand joint pain, odd facial sensations, and a vague malaise/fatigue) have disappeared, though my hand joints still seem a bit
sensitive to overwork - but that is v much decreasing. I suspect that a bit of time is needed for recovery of tissue damaged by the infection. In the first months I had persistent headaches and one day of feeling faint with exercise (? cardiac conduction block) and later, one day of vertigo (if I moved my head, the room carried on moving).
I am hoping that, for me, this is the end of the story - but a number of questions come to mind:-
I think I would have had more of a struggle if I was not an NHS employee. It gives me access to medical journals and probably helps me have confidence to argue my case.
I have yet to see if the antibiotics have been adequate - I reckon the longer I don?t have symptoms, the more likely it has been given the boot.
If the symptoms stay away then I won?t need to argue the case about persistence of infection after treatment. And fortunately I don?t need to argue a case for seronegative LD.
I think my experience is fairly strong evidence that the ELISA test is fundamentally flawed. i.e. the ?textbook? clinical evidence and the Immunoblot are strong evidence in favour of me having had LD
infection and the ELISA tests all failed in their job.
Had I not fought pretty hard to go beyond the Inf Dis Cons, I could easily have ended up with a CFS/ME type diagnosis.
I diagnosed myself at 4 weeks post rash and took six months to get treatment. I only hope that the outcome is as good as it would have been if I had earlier treatment.
So, as I say, I am keeping my fingers crossed that the infection has gone. We shall see.
Thank you for reading this far!