Posted 12/29/2008 10:05 PM (GMT -6)
i got sick right after returning from living in africa. i was 23 years old when i returned, in perfect health. i was a college athlete, no mental/emotional problems, well educated, active, all that. i had started the birth control pills about three months prior to being sick as well.
it began with panic attacks. out of nowhere. began one day, then i was having debilitating panic attacks about three times a day. no triggers. then came facial flushing. pretty transient facial flushing, but with a lot of burning. this eventually progressed, about a month later, to bright red, burning pain, 10 hours long flushing. i had no history of blushing or flushing ever.
during the first couple of months of being sick, i was experiencing inappropriate sinus tachycardia (heart rate would go wayyyy too fast in response to stimuli; for example a minor exercise which would normally cause my heart rate to go to about 130 would quickly make it go to 220). i also developed chest tightness and shortness of breath. major heart arrythmias, including a psvt (sudden drastic rise in heart rate out of nowhere). then came the swollen finger joints. first the joints in my right hand swelled up, i could hardly bend them, they were really deformed. i developed these little nodules on my fingers that were incredibly painful. then this migrated to my left hand. after about three months, most of the swelling subsided.
i also have really low blood pressure, a great deal of vision problems (floaters, flashing lights, bugs crawling in the corners of my eyes, static, can't adjust to night lights). major major cognitive problems (mixing up words and letters and words. not able to get out full sentences. mixing up numbers. horrible horrible short term memory. not able to perform really simple, everyday tasks). also lots of gastro problems (ibs, huge stomach bloating, a lot of pressure in stomach area).
also have a very stiff back of neck and a huge amount of pressure in my neck and head - a feeling like all the blood is rushing to my head, or like it is "clogged" in the arteries and veins of my heck and head. hard to explain, but really really debilitating.
random shooting pains, especially in what feels like my kidneys and spleen. random muscle twitching in eye and fingers, sometimes in legs. hip pain.
i could probably keep going. but i have a lot of symptoms:) i am not sure at all that this is lymes. i had been diagnosed with postural orthostatic tachycardia syndrome, and assumed that is what i had. but i recenctly went to a specialist at stanford, who ruled it out, but agreed i definitely have some forms of autonomic nervous system dysfunction.
i have researched autonomic nervous system disorders endlessly. i have researched the heck out of african viruses and bacteria. nothing fits. when i read about lymes, it just seems to be the most closely related to my symptoms. but again, i really have no grounds to base that on, because i have only been "titer" tested.
well i am probably rambling. you asked about my symptoms, and that usually requires a lot of time!!! i am planning to see an infectious disease doc, but to be honest, i am soooo tired of all the specialists and tests and no answers. i wasted a really long time thinking i had a condition that i do not have, and that i never believed i have, and i am just afraid that it has been lyme's all along and i'm going to spend a lot more time and money on doctors and tests who won't acknowledge lyme's. i have spent two years looking for answers now, and i don't want two more to go by with nothing.
i have always been really outdoorsy and do remember tick bites. it seems super possible to me.