Posted 12/2/2008 6:08 PM (GMT -7)
hi all, i have been lurking on the board here and there. i know that you have a lot of people asking "could this be lyme's" and i don't mean to be one of those people, but i am looking for some feedback.
i am a 25 year old female, and began experiencing all kinds of unusual symptoms about two years ago. at the time, i had just returned after living in rural west africa for about six months. prior to the onset of these symptoms, i had never had a single health issue at all. i was a division 1 ncaa athlete, extremely active, confident and adventerous.
about two weeks after returning to america - maryland - i suddenly started noticing weird changes. the first thing i noticed as an overactive sympathetic nervous system response. out of nowhere, i would become flushed, my heart would start racing, and i would feel a lot of anxiety. likely panic attacks. this began happening often in social situations, perhaps because of the stimulation or excitement that i seemed really sensitive to, or because i was really embarrassed about the sudden onset of this facial flushing.
over the course of a few months, i developed intense tachycardia, shortness of breath/chest tightness, major facial flushing (which i have NO history of), panic attacks (intense!), arrythmias, low body temperature, swollen finger joints, cold intolerance, GI issues, swollen lymph glands, vision problems, and a whole host of other issues.
eventually, i was diagnosed with postural orthostatic tachycardia syndrome, a form of autonomic nervous system dysfunction. POTS is diagnosed by a tilt table test, which shows a 30+ bpm heart rate increase upon a change in position from lying down to standing. however, during my tilt table test, i did not have this great of an increase in heart rate. i had a very unusual heart arrythmia, which led my cardiologist to diagnose me with POTS because quote "it is the most common dysautonomia."
i have since been bugged by the fact that my diagnosis was given because "it is the most common type." just because it is the most common does not mean that is what i have going on.
i am particularly questioning the diagnosis because pots does not typically cause swollen lymph nodes or swollen joints. the swelling in my joints occurred only in my fingers, for a period of about four months. my fingers got really curled inward, and i had these very very very painful nodules develop on a couple of them. sometimes they continue to feel very tight and sore, but not like before. i have had some joint pain in my hips, but not in my knees, which i have read to be the most telling sign of lyme's.
anyways, i am babbling because i am just exhausted of not having answers. none of my doctors understand my current diagnosis, and i can't even get an adequate explanation as to why i have a diagnosis when i did not have the main criteria in which it is even named after.
i have always wondered about lyme's because of the fact that i went from perfectly healthy and great to pretty quickly sick, after being in a lyme infested area of maryland. however, i do not remember having a fever or anything like that. my first indication something was wrong was an overactive nervous system. is this unusual? could this rule it out? do you guys all remember your first symptoms?
i am pretty sure lyme's disease existed in the country in africa where i lived, though i do not know if it is the same kind that we find here. i did have a fever, flu like illness for a couple days there, not long after having a tick embedded in me. though, like i said, not sure if their lyme's produces symptoms like ours.
i tested for lyme's twice, i think through an elisa (?), and had negative results. however, i have read that people on antibiotics at the time of infection could test negative? i was on low dose doxy as an antimalarial. i am not sure if a low dose would stop the lyme's in its tracks, or if it was too low a dose to stop it if i was infected?
so sorry this is so long. for anyone who managed to read all this, i would appreciate any feedback. i spend a great deal of time and energy and resources to handle the condition i have now, so only want to pursue seeing a llmd if it seems absolutely like a reasonable thing to do.