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Hey all, I've been a member of this forum for a good few years now and in that time have made very little progress with my own condition, which was and is still presumed to be ME/CFS. I am based in the UK and in 2011 had a bunch of tests undertaken by the Breakspear clinic, they mostly came up blank with the odd abnormality, gut related issues and such.
Recently, we went back and looked at anything that may have been missed, and realised that Breakspear may have overlooked something with regards to Lyme, because while the serology came back negative there was a partial positive on the MELISA/WB results. These results can be viewed here:
Serology: http://i.imgur.com/fk4V2lA.jpg
Western Blot: http://i.imgur.com/eRud5L0.jpg http://i.imgur.com/vlEpZk3.jpg
MELISA: http://i.imgur.com/8mZEOWZ.jpg
We also noted that my sister who is also sick (diagnosed with CFS) was bitten by a tick within a few months of the onset of her illness, and even had the EM rash (we live in a supposed hotspot for Lyme). However her serology was also negative, wanting some kind of confirmatory test to rule it out once and for all we decided to get LTT/CD57 tests performed.
Her results: http://i.imgur.com/IiSTxqY.png
My results: http://i.imgur.com/CveRtKn.png
As you can imagine, I was pretty shocked to see the striking results for my sister, and dismayed at the lack of findings in my own. However given that it was not an unequivocal negative I decided to have a re-test performed after taking a course of Doxycline with the hope that it might stimulate an immune reaction.
My results: http://i.imgur.com/azb5X3I.png
This appeared to be a weak positive but a positive all the same, so that is two independent LTTs indicating presence of infection separated by a time span of three years. As well as the second LTT I also had a PCR test performed by redlabs, which came back negative.
So I am left in a predicament, I know there is a reasonable possibility that the LTT results may be false positives, but do you feel there is enough evidence here for either myself or my sister to continue exploring the Lyme avenue? And if so who are the best clinicans to see in Europe? We are contemplating seeing Dr. DeMerleir but I am skeptical about the value in this given how snowed under he is and some of the reports that have surfaced of poor standard of care in the last couple of years. Needless to say the health service here is no use since they flatly reject anything outside of the standard 2-stage serological testing.
Any advice on this matter would be greatly appreciated.
Recently, we went back and looked at anything that may have been missed, and realised that Breakspear may have overlooked something with regards to Lyme, because while the serology came back negative there was a partial positive on the MELISA/WB results. These results can be viewed here:
Serology: http://i.imgur.com/fk4V2lA.jpg
Western Blot: http://i.imgur.com/eRud5L0.jpg http://i.imgur.com/vlEpZk3.jpg
MELISA: http://i.imgur.com/8mZEOWZ.jpg
We also noted that my sister who is also sick (diagnosed with CFS) was bitten by a tick within a few months of the onset of her illness, and even had the EM rash (we live in a supposed hotspot for Lyme). However her serology was also negative, wanting some kind of confirmatory test to rule it out once and for all we decided to get LTT/CD57 tests performed.
Her results: http://i.imgur.com/IiSTxqY.png
My results: http://i.imgur.com/CveRtKn.png
As you can imagine, I was pretty shocked to see the striking results for my sister, and dismayed at the lack of findings in my own. However given that it was not an unequivocal negative I decided to have a re-test performed after taking a course of Doxycline with the hope that it might stimulate an immune reaction.
My results: http://i.imgur.com/azb5X3I.png
This appeared to be a weak positive but a positive all the same, so that is two independent LTTs indicating presence of infection separated by a time span of three years. As well as the second LTT I also had a PCR test performed by redlabs, which came back negative.
So I am left in a predicament, I know there is a reasonable possibility that the LTT results may be false positives, but do you feel there is enough evidence here for either myself or my sister to continue exploring the Lyme avenue? And if so who are the best clinicans to see in Europe? We are contemplating seeing Dr. DeMerleir but I am skeptical about the value in this given how snowed under he is and some of the reports that have surfaced of poor standard of care in the last couple of years. Needless to say the health service here is no use since they flatly reject anything outside of the standard 2-stage serological testing.
Any advice on this matter would be greatly appreciated.