Posted 3/17/2009 6:34 PM (GMT -7)
wow, it seems like others are in very similar boats! which is exciting because i don't feel so alone. i too am diagnosed with an autonomic dysfunction virus, but the question is, what virus? no one can figure that out!!
i was bit by a tick while living in rural africa, and i did become sick suddenly about two weeks after that. i of course at the time didn't attribute it to the tick at all. it was about three months later, and two weeks after i returned to america, that wham!, i developed this POTS-CFS-like syndrome, as they call it. i was also living in maryland at the time and spending a lot of time outdoors.
i know that bartonella is in the area of africa where i lived, but they have a tick-relapsing fever, not lyme's disease. or at least that's what they know of. i don't really have symptoms of that tick-relapsing fever. like the fever. so i thought that perhaps i had gotten bit in maryland, which i suppose is still a possibility.
dowa, thanks for the suggestion of the dermatomysositis. i have read a little on it, and need to read more, but i am wondering if this couldn't be a possibility. the only thing is that the joint swelling i experienced was only in my hands, as were the little nodules. i developed a nodule on two, maybe three, fingers. this lasted over the course of, oh, probably three months, and then spontaneously went away. this all occurred about six months after i had been sick and it hasn't come back since. i haven't found any information about dermatomyositis being progressive, or if it can spontaneously disappear.
i am also interested in it because my first symptom was facial flushing, which i have NEVER had before. and i'm talking really really really intense facial flushing. i read that dermatomyositis can cause the malar rash, similar to that of lupus, and many sufferers are initially diagnosed with rosacea. i actually insisted to my doctors, including a dermatologist, that i must have rosacea because of the intensity of my flushing and the legnth of time it lasted (ten hours sometimes), but every doctor has insisted it's not rosacea and it's a result of my autonomic dysfunction. but now i wonder...
i will have to look more into this. i'm just wondering however if because i no longer have the joint swelling and nodules, then i wouldn't test positive for it. i suppose i am more interested in the causes of it anyway. i have read in a very thorough publication that the three main causes are 1. autoimmune (which i have had thoroughly ruled out) 2. cancer (don't think so) and 3. viruses or bacteria, most commonly, lyme's.....
does anyone else have this? has anyone else developed the nodules??? mine were small, red nodules on my finger joints that hurt like heck!
anyways, thanks everyone so much for sharing. i am so glad to hear i am not the only one with the autonomic dysfunction. that definitely causes the worst of my symptoms!