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infested

my doctors call me a "case study"...

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infested

This is a bit of a book. I have been experiencing outbreaks over the past ten years. I have had a total of 5. All outbreak symptoms have lasted approximately 1-2 weeks.

Symptoms (as best I can remember):

outbreak 1 (age 18): swelling of lip and affecting mouth area generally. I do not remember this one being very bad symptommatically.

outbreak 2 (age 19): tingling, then swelling of lip and sores on inside and outside of mouth, as well as canker sores inside. additionally, rash or itchy inflammation in vaginal area. went to a clinic that told me i probably had herpes but either didn't do a test or did a swab and it came back negative. it's hard to remember.

outbreak 3 (age 21): essentially the same symptoms as outbreak 2. both were severe enough to cause me to have difficulty speaking and eating due to the large number of ulcerations in and outside of my mouth. i believe i also experienced petechiae (minute localized hemmorages that look like little red spots) during this outbreak.

outbreak 4 (age 24): this time, without health insurance, i opted to get a good diagnosis. i checked into the emergency room within a few hours of onset of tingling/deep crotch itching. on inspection and after relating my symptoms/history, i was told i probably had herpes. i was given acyclovir. i was swabbed and released. within 12 hours of my initial symptoms i started experiencing swelling of my hands and feet. i also had petechiae over my arms, legs and trunk. i also had a few areas of itchy, red, flat rash on my skin (arms and trunk). by the next morning, the swelling was so severe it was quite a pain to walk. several follow-up visits and a hospital admission later (because i couldn't eat), i was diagnosed with strep, staph, and urinary tract infections. a lot of blood was drawn for tests, and more swab type tests were done. at least one or more of these tests came back negative, but at my last follow up a month later, i was told one of them was positive for herpes (i wasn't told whether it was hsv1 or 2). i was given a prescription for a 1000 mg dose of valtrex 2x day for my next outbreak.

outbreak 5 (age 27, 07.07.2007): upon onset of deep crotch itching (lip tingling started up about an hour or 2 later), i got my ass to a doctor to write up a new prescription as it's been 3 years. i started taking the valtrex within 2 hours of symptoms. i experienced the same symptoms as last time, except no canker sores in the mouth (though i did have some pain in my tongue for a bit of the time). i had red, itchy, flat rash areas in a small spot on the base of my right pinky, above the bend of my left arm, and in large splotches on my back and on the top area of my chest (around and above breasts). i had some petechiae but not as bad. i additionally had redness, swelling, itching, and eventually a bit of peeling of my right upper eyelid. other symptoms of this and previous outbreaks are dried out feeling nostrils and inflammation in anal region (it was very painful as if constipated, and burned to defecate for a few days).

it seems that most of these outbreaks if not all have coincided with the start of a period. in this most recent case, i was on a birth control for the first time and missed a dose. though i was not due for my period for another week or so, i started having bleeding along with this outbreak that persisted for about a week and a half despite my consistently taking the birth control from then on.

i visited my primary doc, as i now have insurance. she was concerned and reordered all the blood tests. the result is that i am a picture of health. no signs of cancer, immune disorder, tyroid disease, hiv infection, etc (i didn't understand what all of the tests were). she sent me to an infectious disease specialist. the specialist ordered tests for rhumatoid arthritis, chickenpox antibodies, and hsv1 & 2 antibodies. the result? i do not have rhumatoid, i have chickenpox antibodies, but i do not have antibodies for hsv 1 or 2.

for what it is worth in this diagnosis, i also had shingles when i was 16 years old (quite rare i understand).

what do i have? what are the odds that this is not herpes? my primary doctor seemed quite perplexed when she gave me the results today, and questioned the legitimacy of the original diagnosing swab test. my specialist is currently doing research to try and come up with some other answers as to what might be going on with me.

the way i see it, i have a condition that both does and doesn't sound like herpes. and i have conflicting test results. does anyone want to weigh in with their opinion? i did see some conflicting opinions in this forum regarding the "lifespan" of antibodies. i'm inclined to believe, by my doctor's reaction, that i really should have them if i have had herpes for the past ten years.

are there any other forms of herpes that might cause a similar reaction? is it possible i had an allergic reaction to the medication that caused the rash/swelling? those two symptoms were mostly gone before i stopped taking the medication (10 day course). if i don't have antibodies but i have hsv1 or 2, how could i have gotten better?

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