Question:
hi, this is going to be a long one. i'd like to share my experience with herpes to see if anyone else is going or has gone thru something similar. i have a case that is currently being described by my doctors as "interesting".

i had an outbreak recently, about 3 weeks ago. up to this time, i had not been diagnosed with herpes, but i believe i've had it for about 6 years. this was, i think, my 4th outbreak. the first time it happened, i lived with my mom, we were poor as all, and no insurance, so basically whenever i got sick with anything, if it didn't seem life threatening to her, i didn't go to a doctor. the second time, about a year later, i went to a small clinic, they looked me over, did a pelvic exam, i asked if it could be herpes, they didn't see any evidence of sores, didn't give me any kind of diagnosis whatsoever, just gave me some medicine samples, and sent me home. i took the medicine, i don't even remember what it was, and i got better. the third outbreak, maybe a year and a half or 2 years later, happened when i was out of state, visiting friends. i stayed with them, sick for a couple of days, then finally cut the trip short, went home and layed low at home for a week or so, thankfully i already had the time off from work for the vacation.

each time i've had a breakout, it has been worse than the last, and each has been severe, itching and burning in genital region for several days, no sores there though, blisters all over the outside and inside of my mouth that ooze puss and blood, sore and peeling skin of lips, and ulcers on the tongue, causing me to not be able to eat for several days. the outbreaks occur right before my period, and even when i don't have them, almost every month before my period i'll get slight burning of the lips and genital itching for a few minutes here or there.

now, 3 years later, i have had another outbreak. the last one was so painful and debilitating that i vowed to head straight to a doctor the next time it happened and get a firm diagnosis of something. because i don't have insurance, and don't have an ID for the state i live in right now, and am still kinda poor, i really didn't have anywhere i could go the day it happened but the hospital, so i headed for the emergency room.

the episode started in the afternoon, with a burning and intense itching in my genital area, followed about an hour later by burning and tingling in my lips. this was normal, each time it's happened to me, it's affected both my genital area and mouth. i waited until the evening, when my lips started to swell, before heading to the hospital, so there would be some physical evidence to back up what was happening to me. by the time i saw a doctor, i had developed a couple of blisters around my mouth. my left hand was also unusually red and, i thought, a little swollen. as well, i had a lot of redness all over my genital area, onto my legs a bit and the vaginal lips were very swollen, but no sores there. they did some exams, collected samples for tests, blood, urine, cultures, etc, told me it looked like herpes and especially given my history of previous occurances, gave me a script for acyclovir and sent me home. when i got home, about 45 minutes later, my feet were killing me. i took off my shoes to find that my feet were swollen and red. i called the hospital back, the doctor said it couldn't be a reaction to the acyclovir already, which didn't surprise me as i had taken it years earlier for shingles, but she seemed to think it could be an allergic reaction to some pain reliever i took, aleve, and told me to get benedryl and come back if the swelling wasn't gone in 2 hours. i took the benedryl, went to sleep, woke up 4 hours later to find the swelling still there, both hands were now red and swollen, the left part of my face around my lips and part of my cheek was red and swollen, i had swelling and redness around my right eye, and i had little red dots all over my legs from feet to genital area, some on stomach, and on the inside folds of my arms. in addition, i had 3, approximately quarter sized, red spots, one on the top of my right hand on the knuckle near my pinky finger, one on my left arm above the inside fold, and one on my right butt cheek. i went back, was seen by several doctors including 2 dermatologists. after much more stuff taken for tests and repeat exams of my skin, their best guess was that i had a staph or strep infection, and i was given an antibiotic for that. the swelling & redness in hands and feet went down within a day and a half, and 2 days after that last visit to the er, i went back for a follow up, and was then admitted to the hospital overnight because i couldn't eat and water, freaking water of all things, was burning my mouth.

long story short, it is 3 weeks later, i've had a lot of tests and what they were able to determine was that i tested positive for hsv1, a staph infection, and a urinary tract infection. the red bumps all over my legs and etc. were caused by bleeding underneath the skin. i still have some residual symptoms, occasional slight tingling/burning sensation in lips, some itching in genital area, and tonite i noticed a small unevenness on the skin right outside my vagina which is round and pimple-ish, same color as the skin around it and almost unnoticeable. the area is not particularly sore to the touch but is a little sensitive. from what i've read about the way herpes infects the areas it's "native" to versus "non-native", like hsv1 in genitals or hsv2 in mouth, i'm assuming this mild bump is a gentle genital infection.

i saw teams of doctors and specialists while in the hospital, and the best idea they came up with was that i might have an auto-immune disease, so they took blood for an immunoglobulin test. all of that came back normal. they made me get an hiv test. that came back negative, very thankfully. i have a another follow up next week with the dermatologists, where i'm imagining they will determine another course of tests now that they know i don't have hiv or abnormal immunoglobulin levels.

emotionally, i am trying not to stress but it's been hard to not know what's wrong and hear that it could be these rare and serious conditions. as far as the herpes diagnosis goes, it's not a big deal to me, i cried the first night and then i got over it. the outbreak doesn't happen that often, and maybe it's helped to have the fear of such bigger diseases, it kind of puts things in perspective when you have to test for hiv, herpes starts looking a lot better :)

in the meantime, i have been searching the web, trying to get information on what else might cause such a severe oral reaction to herpes, and what could've caused all the bodily swelling and other extra symptoms this time. i finally decided to post here, because i want to see if someone else is in the same or similar boat that i'm in, and if i'm not just this weird, exotic medical case like my doctors are treating me as. if anyone on here has had hsv1 reactions similar to this, or if you have some medical knowledge about the condition or in general and can think of something i should ask my doctors about, or that maybe they didn't ask me about, please let me know. or maybe you know something that could cause such a severe outbreak besides hiv or auto-immune disease, please post. i will check all replies, and if you're interested, let me know and i'll post again after my next follow up with an update.

Answer:
Very interested to hear how you are doing... sorry I can be of no help, but I hope those dmn docs figure it out!!

the only question I have is this - did the docs say the sores IN your mouth and on your tongue were hsv? I thought that was uncommon, of course - if your immune system is shot to hell...

als ask - thyroid disease - someone here posted and was diagnosed with it - I can't remember... try and do a search here for that and read her story.

good luck - let us know.
LM

Answer:
the only thing that's been confirmed as far as hsv goes is that i have it. there are several symptoms that have not been linked to one of the several things i was actually diagnosed with, like the swelling, rash, etc. and basically every mucous membrane was "angry", nose, mouth, vagina and rectum.
the doctor i most recently saw, who gave me the news about being hsv+, was not one of the ones who initially treated me, and she seemed to agree with the previous docs that it either sounded like an auto-immune disease, possibly one of the gastrointestinal ones, or "maybe you just have a really bad strain of herpes". ha!
this thursday i'll be going to the dermatologists, they are the ones who initially ordered the immunoglobulin tests to detect some auto-immune problems, and i have confidence they will stick with me on testing this thing until we have it figured out.
i'll post again after that visit and let you know how it went. thanks for responding :)