Hey Jen!
I've been tested for lyme many a time and with many different tests too! I've had the ELISA and western blot ones. I've also had a PCR DNA test for lyme, a CSF culture for lyme and a bone marrow culture for Borrelia which is the bacterium that causes borreliosis (otherwise known as lyme disease!). They were all negative. I think the suggestion of lyme comes up again and again in the more atypical cases of lupus, especially where neurological symptoms are present and especially when those symptoms fail to respond as expected to lupus meds (at least that's what my rheumatologist says!) and given that lyme disease can be quite tricky to detect it's most excellent that docs are aware of it and look for it when needed!
Have you done a CSF test for lyme??? I was told by my neurologist at some point that lyme does tend to hide in the central nervous system on rare occasions and because the antibodies can get kind of stuck in the cns and are thus protected by the blood brain barrier (i.e. they don't circulate in the blood and thus can't get "caught" in a blood test) the CSF culture is sometimes needed to "find" the disease (if one has many unexplained neurological symptoms etc etc).
I've also been tested for coeliac; did you have upper/lower GI tract endoscopies and biopsies or blood tests (or both) for it?
Best of luck with the coeliac results!
Hope you're doing ok,
Zoi
I've been tested for lyme many a time and with many different tests too! I've had the ELISA and western blot ones. I've also had a PCR DNA test for lyme, a CSF culture for lyme and a bone marrow culture for Borrelia which is the bacterium that causes borreliosis (otherwise known as lyme disease!). They were all negative. I think the suggestion of lyme comes up again and again in the more atypical cases of lupus, especially where neurological symptoms are present and especially when those symptoms fail to respond as expected to lupus meds (at least that's what my rheumatologist says!) and given that lyme disease can be quite tricky to detect it's most excellent that docs are aware of it and look for it when needed!
Have you done a CSF test for lyme??? I was told by my neurologist at some point that lyme does tend to hide in the central nervous system on rare occasions and because the antibodies can get kind of stuck in the cns and are thus protected by the blood brain barrier (i.e. they don't circulate in the blood and thus can't get "caught" in a blood test) the CSF culture is sometimes needed to "find" the disease (if one has many unexplained neurological symptoms etc etc).
I've also been tested for coeliac; did you have upper/lower GI tract endoscopies and biopsies or blood tests (or both) for it?
Best of luck with the coeliac results!
Hope you're doing ok,
Zoi