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Not believing HSV diagnosis -- initially told it was impetigo (bacterial skin infection)

Been scrolling through, reading posts on this site for two days now. I'm 42, female, just came out of a decade of celibacy a year ago. Before that, I'd had 2 sex partners and never had a single cold sore or a yeast infection.

After coming out of celibacy, I sowed the wild oats I never sowed when I was young. Had 4 partners. But 2 months ago I met a great guy. Crazy about each other. Terrific sex. Best I've ever had.

Two weekends ago, his mustache rubbed a tiny spot raw on my lip. I put Neosporin on it. Nothing happened with it until Thursday of that week when it started to swell around the raw spot. Saturday I went to his house and the spot was getting larger. Never looked like a cold sore at all.

By Saturday night it was oozing clear liquid. Developed blotchy redness on chin and lower half of my face. Sunday on the hour drive home, I got a fever. Lymph nodes in my neck started to hurt.

By Sunday night, the red blotches on my face had turned into hives.

I took the entire week off from work while the hives on my face got worse and worse. They'd break open, ooze, and scab over with a honey-colored crust. I looked like cystic acne had covered my face from the nose down (and onto my neck) barely leaving any normal skin to peek through.

I also noticed a couple of small spots on my vulva/inner labia area that looked a little raw. I assumed it was "beard burn" from overzealous cunnilingus. No big, open wounds down there. Nothing blistered, oozing, or crusty.

Monday, I visited my M.D. Then she said it was impetigo, a highly contagious bacterial skin infection that mostly children get. Never heard of it. Prescribed antibiotic pills and cream. Said if it wasn't better by Wednesday I should come back.

Wednesday morning I was worse. She got me an appointment with a dermatologist for Friday.

Friday the young dermatologist said, "That's herpes."

I said, "No, my doctor said it's impetigo and sent me to you for a follow-up."

She got samples from 3 or 4 sores to send for tests. She glanced at my labia but didn't really get in there and get a good look (no samples).

I asked, "By herpes, do you mean the cold sore kind like everyone has? Or do you mean the kind where my life is never going to be the same again?"

She said, "Your life will be fine. Herpes isn't like what it used to be. It used to be the good kind and the bad kind, but now it's all just herpes."

She prescribed Valtrex twice daily, but was wishy-washy on whether I should just take it for a few week or take it forever. She decided on taking it for two weeks.

I happened to be seeing this doctor on her last day at this hospital, so she scheduled me for follow-up in 3 weeks with another doctor in her office.

She didn't say anything about HSV-1 vs. HSV-2. Didn't give me resources to learn more. Didn't give me any kind of paperwork to leave with other than a prescription.

I was stunned. I sat in the parking lot Googling on my phone and crying for 20 minutes, and then she called. She said, "I was just thinking about how your sores are so diffused on your face. That's unusual. That happens sometimes with HIV. You need to come back and go to the lab."

I went back inside and they drew blood.

I went to get my prescription. My eyes had been extremely sensitive to light for the last few days. I Googled again and saw info about herpes in eyes.

I left a message for the doctor. She called back while I was in the store. "Didn't we talk about your eyes?

I said, "No. Nothing about my eyes."

She said, "Oh. You're going to need to go to the emergency room right away. This could be serious."

I said, "My co-pay for the ER is $250. Is there any way I could go to Urgent Care? It's $75. I just can't afford a $250 co-pay."

She said she'd see if she could find an alternative. Within minutes, I was on my way to an ophthalmologist.

He said I had herpes (Herpes simplex keratitis) in one eye and dendrites. He said to take the Valtrex 3 times a day (instead of the 2 times it was prescribed).

So there you have it. Always a good girl, then freak-of-nature celibate girl, and once I rediscover sex and think I'm falling in love with a great guy -- BAM!

I feel angry, confused, worthless, lonely, ugly.

Everyone still thinks it's impetigo and that's the story I am sticking with.

Boyfriend has not seen me at all. Haven't told him the big bad info. I've been home from work the entire week. Sent photos to some friends and to my boss to make sure boss would know I was not playing around and really couldn't come to work.

Today I had a meltdown because of the stress of everything, plus all of the Googling and reading, plus wondering if my life will ever be the same, plus the thought of going back to the celibate life is killing me. I love sex. I love this guy. I went from Googling engagement rings to Googling herpes.

1. I have no idea whether it's HSV-1 or HSV-2. I guess I'll find out when the swab tests and blood tests are complete. I still think it's possible that I have an incredibly bad case of impetigo.

2. I don't think I have anything in my genitals. It was like a couple of mini skinned spots. I've done that to myself accidentally when shaving down there. It very well could have been from his beard.

3. I'm not convinced this is HSV in my eye. Five months ago, I was diagnosed with keratitis after removing a contact lens when my eye was super-dry, and it caused irritation. The eye doctor said I needed more lubrication on my eye and I started using drops. Since that time, I've done it again twice -- yanked a lens off when my eye was too dry when I knew I should have used drops before trying. And I had just irritated my eye again a few days before this ophthalmologist looked at me. He didn't do anything to confirm HSV. The dermatologist called and told him I was diagnosed with HSV and I was having light sensitivity. He did an eye exam, and saw dendrites, but wouldn't he have seen that because of my bad habit of removing contacts when my eye was too dry, even if HSV was not a factor in this whole thing?

I'm trying my best not to slip back into depression about this. Yesterday was really difficult. Today is Saturday, the day after I saw the dermatologist who diagnosed me just by looking at me, and it's been a very difficult day.

I can't tell my parents. They'll be judgmental and tell me I have been sinful and caused this to happen. I can't tell my siblings. I can't tell my friends.

I can't even tell my boyfriend. By the time I see him again -- this coming weekend at the very earliest would make it two weeks since the tiny spot that was rubbed raw on my lip by his mustache starting to swell up and ooze, which we joked about and said I had a fat lip. Maybe I will have healed enough to see him by then. Maybe not.

For now, I'm taking the medication, keeping the massive wounds on my face covered with antibiotic ointment, walking around the house crying so much that my face is wet not only from the antibiotics but also from constant tears.

Now I sit and wait for the test results and then I'll see if my life is going to fall apart. I'm just praying it was a bad case of impetigo and the young dermatologist was too eager to diagnose just by sight.

Thanks for reading. And thanks for the great posts here. They're truly helpful.

Comments

  • edited December 2017
    The last few weeks sound like hell for you, @TeaWithTheQueen, and I’m sorry. It’s frustrating to not get clear answers and it’s isolating to not be able talk about what you’re going through. Hang tight for those test results. Uncertainty, for me, is worse than any diagnosis! Once you know what you’re dealing with, you’ll be able to develop a plan to manage it. Once the physical symptoms have been managed, you’ll find ways to manage your emotions, find perspective, and start feeling like yourself again.

    One step at a time, my friend. Just know you are not alone. I wish I were there to give you a hug!
  • Thanks for the response, HikingGirl!

    Yes, one step at a time.
  • Sunday morning, talking to the boy friend on the phone, and I mentioned that I hadn't yet unwrapped my face to see about progress. He was surprised that I was wrapping my face. The wounds are SO BAD and the first night I had ooze and blood all over my pillow. So I used non-stick pads and paper tape to wrap up my face and protect them all night.

    Boyfriend said, "Yeah, sometimes when I shave I'll get a little spot or two that's kind of weird."

    That was the only mention of anything remotely close to this whole ordeal, and it made me wonder if he might have HSV.

    I still have not mentioned HSV to him. I'm still calling it by the original diagnosis -- impetigo -- until I know something for sure.
  • Wow 10 years w out sex ?????
  • @Lifegoesonn

    Why would you make such a post?

    This forum is for support, you're basically kicking someone when they're down.

    If the only thing you have so say is negative don't bother posting. That was very rude and immature of you.
  • Yes, 10 years without sex.

    I was badly hurt in a divorce. I did not date at all. I concentrated on raising my child, going to grad school, and getting a professional career going so I would never be in a position again for a man to destroy my life by leaving.

    It is totally possible to live a life without sex.
  • How is that negative and kicking someone while they're down ? It's a questions meaning I'm shocked to meet someone that had 10 years without sex , how the hell is that negative ?? , she didn't say she was offended , that's very IMMATURE and RUDE of you actually ..smh
  • Thanks, people. I came here because I had a vague diagnosis and some tests were being done. The doctor did not give me ANY information except for "There really isn't any difference between the two kinds of HSV," which left me in despair. Came here to read posts and learn as much as possible, and then a disagreement breaks out on my thread.

    Would have been nice to hear a little reassurance that it was going to be okay either way, or a simple welcome.
  • It's Monday. My dermatolgist appointment where she looked at me and said I have HSV was Friday.

    Today the nurse from the dermatologist's office called to check on me. I told her how the dermatologist said she'd get me some literature and resources to learn more, but I left empty-handed. And how I was sitting in my car, Googling this on my phone while crying, when the dermatologist called back and said, "I don't like how the sores are so diffused on your face. That's something like happens with HIV. You've got to come back so we can do labs."

    I told the nurse that I left the office in despair, thinking the worst, thinking my life would never be the same, and she apologized.

    She is checking her computer system throughout the day for my test results and will call me.

    I did pull up my account on the hospital's patient portal.

    HIV test was negative.

    No HSV results are in yet, though, and it's almost 3:00 p.m. They took samples from sores on my face and also took blood. Might still be a few days before they're back, though.
  • It is gonna be fine , you didn't do anything wrong , my whole family gets cold sores , it's possible it's not even herpes related , doctors don't know just by looking at a suspected sore , it's just a incurable virus like any other virus that we all carry , there's more people that won't care about it vs people that will care about it , that's amazing how you were celibate for 10 years, and you did nothing wrong and it's going to be okay, I'm glad you don't have hiv
  • I know your feeling. Breathe, and know that it will be ok. The first episode is the worst with hvs2.. idk about one.. but from my understanding.. hsv 1 u have less episodes while 2 has more... i was told that 2 is for the lower part of the body, yet u can get 1 there too, And vice versa. It's all about open wounds and shedding on a sum of a view I got from a friend to get me to relax. I was not ok and very dpressed, Im better now that I learned a lot & still learning a lot. I found out at the end of july that I had hsv2. One thing is that I can say an wish someone would of told me... If you bite ur nails or anything like that stop, I was hard my nails in July , with what life had for me. Do to that, I am in a spot that I may have hsv on my hands,(secondary b.o.?) I pray they are something else. I understands how u feel left in the dark by drs, I still feel that way to this day. I'm my opinion Google is scary... do search things and take notes, that way u can bring it up to ur Dr. And nothing is missed.
    Sorry for the scattered ramble, having to put the phone down a lot during this text.
    Happy u don't have hiv.. that is a positive outlook. Hang in there, when u learn more the less scary it is. U are not alone! U Would be surprised on how many people actually have it, some know, some don't.
  • The nurse FINALLY spoke to the doctor about my test results and called me back today (one week after the appointment with the dermatologist/swab test/blood draw).

    She said it is definitely HSV, but she said they did not test to find out if it is HSV-1 or HSV-2. Shouldn't they have determined this???

    I already have a follow-up appointment with a dermatologist scheduled in a little over a week. This nurse said I should gather my questions together and be ready to ask the doctor at that time. I'm already thinking I've learned more right here on this forum than I learned from talking to the previous dermatologist and to this nurse.

    I still don't see blood test results listed in my medical record online. The phone call from the nurse was based on the swab test results.

    Along with other questions about how this might change my life, I'll be ready to ask if it's HSV-1 or HSV-2.

    And I need to ask if they did IgG antibody tests, right? I have no idea if this is something they automatically do when they take blood for testing. I did not know enough at the time the blood was drawn to ask. But I also thought when my PCP tested me for STDs several months ago, she was actually testing for all of them -- then I learned they don't include HSV in those tests, which is ridiculous.
  • I've been seeing this man for two months. We're a little over an hour apart, so we don't see each other often. Six weekends in two months.

    We have never used condoms. We both hate them.

    When this illness crept up on me, he knew that the irritated spot on my lip had been caused by his mustache. We joked about it. My lip was irritated during our last weekend together, and it started to swell and ooze clear liquid a little. The next day, after I left him and was driving home, the fever hit me, my lymph nodes started to hurt, and the day after that my face exploded with what was initially diagnosed as impetigo.

    I have kept my story of impetigo. I'm not about to tell my entire company, all Facebook friends, real friends, family, business associates, etc., what this really is now that I know.

    Two days into this mess, when my PCP diagnosed me with impetigo, I let the boyfriend know what it was. His first response was, "Do you need to let the others know?" Meaning others I have slept with.

    I said, "What are you talking about? I don't have HIV. I don't have to go through a list of previous lovers to warn them."

    So that upset me when he said this.

    While talking a few nights ago, he said something about how he sometimes gets irritated places around his mouth after shaving.

    That made me wonder if he meant cold sores. (I've never had a cold sore in my life. Not even with this first breakout.) He has a mustache and small beard, so if he did have a cold sore it might be difficult to see.

    Then tonight while texting we were talking about how it would be nice if we didn't have so much distance between us so we could see each other more often. I said there are a few advantages to having a sort-of-long-distance relationship, like we both have time for the other things in our lives -- work, family, friends, chores around the house.

    He texted, "Do you mean you have time to see other people?"

    I said, "No, I'm only seeing you."

    He said, "You didn't get your medical issue from kissing me. I do wonder."

    Once again, he upset me without having any idea. I did not respond.

    He half-ass apologized. Said he's tired and that he says things he shouldn't say when he's tired.

    I've been sitting here all evening, reading posts, and trying to figure out how in the world I might disclose this to him. In a way that he would understand. In a non-accusatory way. Trying to get around the fact that so many people are so uneducated about this illness. Considering the fact that he may or may not realize he already had it. And considering the fact that he probably has no idea that everyone with cold sores has this.

    And then he says I didn't get it from kissing him.

    I'm 95% positive I DID get it from him.

    My breakout happened and he was the only person I had been with for a while. The breakout was FIERCE. I still have not healed (although they've dried up -- just waiting for the redness and rawness to go away). The dermatologist asked how many days it had been since I had seen him until the time of the outbreak. I had seen him the previous weekend (which is when the raw spot on my lip happened and it stayed raw all week), and then I saw him the next weekend. The episode began that Sunday. She said that fit the timeline for him giving it to me and then my face exploding.

    I've gone from floating on a cloud of happiness thinking I might marry this guy to feeling like I'm in despair and no one will ever want me again, all within the last week.

    I've gone from loving sex and enjoying it over this last year to thinking I'm about to be slammed back into the jail of celibacy that I was in for a decade. Only this time it will last until I die.

    He and I may not get to see each other for a few weekends because the holidays are upon us, and because it's winter and it snows here. Weather could hit at any time and keep us off the roads. So I may have plenty of time to think about how I will present this to him. I'd prefer to do it in person. It might be terrible. I might drive home in tears. Or send him away with me in tears. I was really thinking we cared about each other, but I'm beginning to wonder if he is close-minded and will not understand the basic concepts of this condition.
  • Ohhhhhh... I forgot how small this screen is to type in & I'm the worst with text. So forgive my typos.
    One, I don't get why they didn't tell u right away if it was 1 or 2... but with what I am reading our story's are a lot a like. Yet , i had a bad spell in the lower area.. my o.b. said it was the worst she had seen in years... lots of stress during that time. She also told me the same with time frame with the guy I slept with(it was him most likely) . With out seeing it, and picturing it , with what I know I would say u have 2.. I could be very much wrong...
    they are not very much diffrent I had as them as sister's. Idk how diffrent the episode's are with amount of sores... my mothers 1 is NOTHING.. but my 2 was just bad all together.. i know 2 is more frequent.. I'm not a Dr and still learning.. it's not the end of the world. I thought it was for me and still feel it from time to time. H lies dormant it could of been asleep for a long time in ur spine , and woke up or of no where, and could go back to sleep.. now or later. That is from my understanding & everyone is diffrent...

    Goodness...
    I have so much to say to ur response.. what ur fela is saying sounds like the one im at odds with now and may have got it from him. I can be a fire ball at times an boy.. I was mad and to my limit. After I left my o.b and she said" it could be, im sure it is... but let's test. " I called him... &... He said he gets a little spot from time to time.. heat spot.. has had it for some time & tested and so on.
    Do i belive him no.. I've asked for his paper work and have yet got it. I pary u don't have a "chopped" relationship.. like I do.. I was cloud 9, then I hit a wall. Your guy may have an idea... but he has never fully known.. ???
    Just in a way to get yourself ready for the talk .. look for empathetic reaction, yet a shock and knowable statement from ur poin? Don't start off with the illness but the experience on basic level..
    I would do your Research still about what they first said u had and learn some hard facts of hsv. It's like an open close case. .. u dont know how deep the convo will be...
    The guy I belive I got it from had a lot of facts for me.. it was off but he is mad smart. It calmed me down.. So I'm trying to open a view of having this down pat... like a draft.. nothing diffrent then I would tell me best friend, but u have to do what's best for you. It's a hard topic..

    shedding is a big thing... with what info I got... we don't always pass it. There Re times of shedding when marks are not there. I saw a post on here of a woman who had it she has bee. married for a good length of time and he has yet to get it from her.

    I can say I have become friends with tea tree oil... look that up. I have a bottal on hand.. Yet I have discovered hemp tea tree peperment oil ( something aling the lines) body wash. I haven't looked it up , but it makes me feel better about life.. it's the little things.

    Make sure to not alow cuts to tuch infected area, well really any thing wrap that up if possible.. liquid bandaid also a bff along with hand saandatizer.. keeping hands clean is good but soup kills the bug is I read right.

    All in all a way I gripped it on emotional view was the movie Fiqhi Friday With Lindsay lohan.. she coukd kiss him all the time but then she had a cold sore... nope.

    Sorry for the scramble book.. I know exactly how u feel.. remember u are not alone!! It's not as big of a thing as u learn more. U can inbox me it u like. Also , u will know what to do with y'all talk be open minded at all time Nd don't forget to use "i" not "you" he could end up being in shock too.. can't let someone drift in a bad way.. have to take care of the same shock wave even if the volts are to high. Hang in there.
  • I can’t figure out how to upload photos here. So here is a link to my post on another forum with two photos of my first (and only, so far) outbreak.

    Just wanted to ask if this looks like HSV. I have Googled like crazy but have not found photos that looked like my outbreak.

    Thanks!

    LINK TO 2 PHOTOS:

    https://honeycomb.click/topic/73571-questions-about-first-outbreak-photos-included/
  • hi teawiththequeen. i remember so well how it felt when i first got herpes, your story brings me right back. i started dating a new person. we had sex and used a condom. but i got herpes anyway. started with a little spot genitally, then before i knew it i had sores inside my mouth and painful sores genitally and some hard bumps which i think were lymph nodes. i was so sick for so long. pale, exhausted. and i sat in the dark googling and googling, feeling so alone in the world, doing anything i could to keep busy in my dark little apartment because i didn't want to close my eyes and try to sleep, it was too emotionally painful to be quiet. however, i didn't have any fear about confronting the guy because i knew he gave it to me.. i went off on him. he admitted that he knew he had herpes and he didn't tell me. he offered to bring me medicine or anything i needed, but at that point i wanted nothing to do with him. he ruined my life, and i told him so. i was also not promiscuous. that was 11 years ago.

    regarding testing, the swab will only tell you that you have herpes. western blot is the best way to diagnose hsv1, and i was almost a year in before i got a positive diagnosis. imagine that. but yes IgG and IgA are the tests you need, for each virus. one of them, i'm not sure which, tells whether the infection is new, one of them reflects antibodies developed over time. it sounds to me like he is responsible for giving it to you since your outbreak is so bad. BUT, if he doesn't have much in the way of outbreaks, he may never have looked into getting diagnosed. that said, it's possible he knows and is too much of a coward to be honest with you (i say this based on my personal experience).

    i completely understand what you are going through. it's a dark place. but things will get better. if there is someone close to you that you can confide in for moral support and just to unload, i recommend that. be good to yourself, though i know that's hard to do when all you want to do is cry and take back what you did. in time you will integrate it into your mind and your life. you will be okay. i promise. much love.
  • It's crazy because the outbreak you have I got months after a possible partner and have no idea who it is smh and I used a condomi just liked you
  • @lifegoeson, i didn't have sex with anyone else except my ex at that point. and since this guy admitted to having it, i know it was him. i wished bad things on him for a long time. i guess i still do. i haven't made peace with it even all these years later.
  • @sweet66 - Thanks for your response. You’re right. I just want to be alone and Google to learn as much as possible. I’m on the verge of tears at all times.

    At this point, I truly believe current boyfriend has no idea he has it.

    We’re still taking and texting and planning a romantic weekend, although this will be the first time we’ve seen each other since this nightmare began. So it will be time to tell him.
  • @teawiththequeen i wish you the best. did you get your results yet? do what you need to go get through it, you are what i consider to be grieving the loss of who you used to be, essentially - at least that's how i felt about it. in the end i hope you both can settle in and be okay. i hope you quickly find a way to integrate this into your life, unlike i have. maybe that's my work for this year. happy holidays.
  • The only results I have received were a phone call from the dermatologist’s nurse saying yes it is H, but no indication of 1 or 2. Dermatologist had written in her toes (which appeared in my account online) “HSV and Genital HSV.”

    I’m assuming it’s HSV-1.

    The did the swan test and also took 5 vials of blood. But if I was just exposed it wouldn’t show up in my blood until 3 or 4 months later, right?

    I see a different dermatologist in a few days for follow-up. (The one I saw was locum tenens and gone now.) I may need to find a different doctor because the nurse who called me with diagnosis told me some inaccurate information, like, “The doctor said to tell you that you’re only contagious from the time you feel a tingle until the sores have dried up, so don’t have sex then and you’ll be fine.”

    The nurse told me that my regular MD would handle this for me for the rest of my life, and after the follow-up with the dermatologist there would be no reason to see their office again.

    But my MD is the one who misdiagnosed me as having impetigo, which delayed me from getting antivirals quickly. Instead, I was on antibiotics for 5 days. Maybe if I’d had the Valtrex sooner, the OB wouldn’t have become so severe.

    Also, I told my MD that I had something going on with my vulva. She knew impetigo would not be in the vulva. Yet she sent me one with antibiotic. I’m still phased at her and she’s been my doctor for 12 years.

    What kind of doctor is best to deal with this? Gynecologist? Infectious disease?

  • A gynecologist is your best bet but I heard the exact same thing from mine. One said I didn't actually have it, I had only been "exposed," and the other said I could only transmit via an active ulcer (which I have never had). Both discouraged me from taking antivirals. One actually yelled at me when I asked.
  • sometimes i think these doctors have hsv themselves and are in denial. seriously. i didn't learn anything from mine. i learned it all on my own and from folks in forums like this. it's ridiculous.
  • They do my doctor admitted to me that she had genital hsv I thought she was telling me to make me feel better but she told me her story and it was believeable
  • @sweet66 Roughly 80% of adults have HSV, so yes, the doctors are more likely to have it than not have it. Ditto for 80% of their patients.
  • edited January 13
    Today I got the results from going to an independent lab to get the 10-test panel for STDs, including IGG for HSV 1 and 2. I didn't wait approximately 3 months after I think I was infected because I wanted to see if I would have a low number NOW and a high number THEN, to potentially indicate if this is, in fact, a new infection and potentially from current boyfriend.

    The results:

    HSV 1 IGG 5.92
    HSV 2 IGG <0.90


    With a score of 5.92 showing up 6 weeks after my initial OB began, is it possible that this is still a new infection? As in, from current BF? The blood was drawn for IGG 12 weeks after he and I began having sex.

    When the dermatologist looked at my face and vulva during the initial OB, she said that based on exposure, incubation period, and my OB, current BF is the one who infected me.

    I was going to wait a few more weeks before doing the IGG to give the antibodies a chance to build up in my system, but decided to do it once now and then again later. I was hoping it would show a low number now, to prove the dermatologist's theory right. But maybe I waited too long and my antibodies are working quickly?

    I just want to know whether or not current BF is the one who gave me this. We were under the assumption that he was. There was almost a comfort in thinking that if we both have this, we won't have to deal with those awful condoms.

    He has not taken a test at all yet.
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