Posted 3/13/2009 7:50 PM (GMT -7)
hi dowa, and thanks for your response.
i still don't have a llmd. i was waiting to meet with my infectious disease doc again, who ran a whole panel of tests like all the herpes, epstein barr, mycoplasma, etc etc. i was interested to see how those came back, as i have been loosely diagnosed with "pots-cfs-like syndrome." that is my diagnosis. it is very questionable. my team of docs agree that an infection or virus triggered this. but no one can answer which one. my ID doc, who also specializes in CFS, sees a lot of people with EBV and the likes that can cause CFS.
However, all those tests were negative for me. So, I still have no answers at all, and I honestly feel like lyme's is like the only possible option left. especially given that i have a history of a tick bite in africa, where, despite lyme's disease not being known there, an NIH study found the borrelia species in a village really close to mine that caused tick-relapsing fever. so i am definitely feeling the pressure to see a tick doctor. but i just want to feel like lyme's, or something similar, is a really viable option for me before i do that. i am a student, so the money would be really really really tough for me to come up with. i have some concerns about the onset of my issues and how much they don't fit the typical "lyme" picture. i started with facial flushing, panic attacks, and a really rapid and forceful heart rate. then came shortness of breath, chest tightness, and months later, finger joint swelling came. it just seems like an unusual onset of something like lyme's. i have not ever read in any literature about anyone having facial flushing, heart problems and panic attacks as the very first symptoms.
so i have reservations about shelling out hundreds if i don't have this problem. i have an igenex test with a positive 41 and indeterminate 31. this is not very strong at all. though, if the CDC would have considered a positive diagnosis had that 31 been firmly positive, then it seems like i could be right on the edge...
anyways, i am blabbing (sorry, really brain fogged right now!), and i know no one can give me an answer here, but i am just wondering if anyone knows how likely it is that people without lyme's would have indeterminate bands???