Discussions By Condition: Medical Errors

Not Herpes, but what could it have been?

Posted In: Medical Errors 22 Replies
  • Posted By: chicaespana2003
  • December 30, 2008
  • 09:34 PM

Back in early September, September 12th to be exact, I woke up with a hot, itching, burning and tenderness in my vaginal area also with painful urination. Not knowing what to do I asked my mother for advice, she suggested that I purchase an anti-itch cream with a soothing additive. I purchased maximum strength Vagicaine. However the application of this cream did not calm the burning. The entire night I did not sleep well and lesions had appeared. September 13th I went to an urgent care where they took a urine sample and a labia sample. They diagnosed me with vaginitis with a bladder infection, since it appeared as their was blood in my urine. The same day, since I was not getting any better, I called my OBGYN and the operator contacted the Dr on call, who then diagnosed me over the phone with a yeast infection instead of vaginitis. The next day, the urgent care center called and told me that I did not have a bladder infection.

The medication I was prescribed for the yeast infection, assisted with the removal of the lesions- literally they fell off. When attempting to look at a lesion, one side appeared to look like crushed velvet, and the other side had a white "tail."

On Monday, I called the OBGYN clinic wishing to make an appointment to see a dr, as my primary OBGYN was not available. The soonest opening was on Tuesday. Due to the pain that I was in, I had to leave work early. When I did see the Dr, he took one look at the situation, and stated that it was Herpes. I was devastated, because I am not sexually active or sexually promiscuous at all. (Really- I'm not kidding! Religious reasons, please understand.) He took a culture for HSV. He then prescribed me to take Valtrex (initial 8 day super dosage, and then 30 therapy) and an ointment to put on the lesions.

I had attempted to do my research on HSV and how I might have contracted it, and any possible other diagnosis it could have been. Both my mom and my boyfriend thought maybe it could have been shingles (herpes zoster). I called my Dr for another appointment to see if I could have a blood test for shingles. He came in and explained to me that Measles, Mumps, Rhuebella, chickenpox, cold sores, herpes and shingles are all in the same virus family. He asked if the medication was working and I had said that it was. To him, that was the end of the discussion.

For the next few weeks I worked on trying to accept that I had herpes, but his explination of how I contracted it boggled my mind. He said that I could have gotten it from shaking hands with a person who had an active cold sore; when i was younger a relative could have kissed me; or I could have gotten it from a toilet seat at work- and the trigger that allowed it to come out of dormancy was stress from my job. I was still determined to have a blood test after the 16 weeks had passed (based on information on the internet).

About 3 weeks ago I called the OBGYN clinic and asked what steps would I need to take to have a blood test taken for HSV. The nurse on the phone never heard of such a test, and then asked the other nurses- none of them had ever heard of a test for HSV. The next day I called my family Dr, and scheduled an appointment that day for a sinus infection- which I had. While talking to him I explained my story, he then stepped out and brought in a book with classic pictures of herpes. I told him that I never had the classic clusters. He did give me the paperwork for a blood test and the following day, I had the blood test taken.

Yesterday, Dec 29th, the results came in (via phone)- for both HSV-1 and HSV-2 the test came back negative. I had asked if the numbers were below the .90 and he said that they were below the .90 and that I was healthy. This makes me very happy, but now I'm wondering- If I didn't have herpes, then what did I have? A week ago I noticed that I have scars where I once had the lesions.

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22 Replies:

  • A question to ask, since there is a boyfriend, is, "still virgin"... mean never naked together??? You don't need to have intercourse to get herpes. Skin to skin will work. Or have you had sex in the past? Things have a way of surprising us. Unfortunately, there are false negatives with the herpes test. It could have been shingles, but if your lower back did not ache and drive you up the wall for weeks, it probably wasn't shingles. I would ask the boyfriend (if you have had skin to skin contact) to get a blood test for strickly the "herpes 2 specific" blood test....not the combo hsv 1/2. Also, depending on where the disease is, the test needs to be either IgG or IgM or both. IgG would be for herpes that has been there a while and the IgM usually indicate new exposure. Get a copy of you herpes test and see which one he did. You may want to ask for the specific herpes 2 IgG and IgM tests. Until you have a diagnosis of something else, it is still possible that you do have herpes. I hope it isn't, but you will certainly know over time. If it comes back, especially around your period, it probably is herpes in spite of the negative results. I can't think of anything that acts the way you described it....but others may say you got it from a cell phone or that it was yeast, soap or a dozen other things....if you have never been naked with anyone, the chances of catching it off of a toilet seat is rare and if a relative kissed you when you were younger, you would have gotten it on your mouth, first. That being said, it would be unlikely to be herpes if you are a virgin whose genital area has never been touched by the hand of man...yes, men rub their lips and if they had herpes1 and then touched you, they could have given it to you that way. By the way, you need to inform the doctor about the nurses and their responses to you.
    Monsterlove 2,921 Replies
    • December 31, 2008
    • 05:45 AM
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  • I have never been fully naked with the bf, and we are both virgins. We have been topless- but that is the extent of any skin exposure.The blood test I had were 2 separate tests.When I suggested shingles to the OBGYN, he said that it couldn't because it would effect one side of the body, and that it is in the same virus family.Since the initial outbreak, I have not had any outbreaks.
    chicaespana2003 7 Replies
    • December 31, 2008
    • 02:42 PM
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  • I just wanted to offer some support after a similar thing happened to my 13 year old daughter. The urgent care doctor took one look and said herpes. I said that was unlikely - and he looked at me like I was an ignorant mother in denial about her little girl. He questioned her and asked her if she knew that there were "other" kinds of sexual contact (which she knows!) He was stern and obviously did not believe her and was annoyed with both of us - he actually seemed disgusted! My daughter was devasted and freaked out - she was crying hystarically! (I do understand he had to ask, especially because it looked "textbook" to him - believe me, she has raging sores, but it was still humiliating to her.) Luckily, they took the blood test and culture and she does not have herpes, or any STD (I knew she didn't and after we left the urgent care I was able to get her to laugh about the "flying alien herpes virus that attacked her in her sleep!") My biggest concern is still - what is going on? Does she need an alternate treatment? Her sores are bad and she missed 3 days of school because of the pain. We are still wondering and have had difficulty finding an ob/gyn to see her because she is a "new patient" and because of her age - and have to wait for an appointment. She really doesn't want to see her pediatrician for that! She asked for a female ob/gyn - which mine is not. She did say that she had self-treated itching and burning, (possibly her first yeast infection?) She had put on tons of "Itch-X," cortisone cream, yeast infection cream and antibacterial ointment. I wonder if you can get blisters and sores from some sort of contact dermatitis? She does have a lot of allergies! Either way, it is annoying when people keep saying - "come on now, you really had sex of some sort - didn't you....? You MUST be lying (or stupid,) and there is more than one kind of sex, you know!" (Why would you lie on here anyways... lol - you could just say you had sex if you did!) YOU know what you have done and not done. You sound like you are more responsible than many of today's young people (today's old people for that matter). I just wanted to offer some support, because people are so quick to assume and judge, and I believe you. There must have been something else going on. Just watch out for the flying alein herpes attacking you in your sleep - ha ha!!
    ms1105 1 Replies
    • January 8, 2009
    • 01:27 AM
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  • Just watch out for the flying alein herpes attacking you in your sleep - ha ha!!That is funny.I thank you for your kind words. Today's world is so hard to live in, sometimes I wish I grew up in the '30's.Your daughter, if she has the F.A.H.(flying aliens) that I have, she is not going to want to move at all. Walking is a chore in itself. If she has returned to school, phys ed is going to be murder, and w/o a Dr's note she is not going to do well, grade wise. Staying in one place, on position is the best- a pillow may be needed to avoid unwanted pressure.To alleviate some pain: I found it to be comfortable to have a moist warm cloth handy when visiting the facilities. Helps ease the burn, also with the ointment I was applying I had to clean and blow dry the area. It was rather different to stand with a blow dryer drying my vaginal area. Afterwards I would lounge around the house semi "commando" in my gauchos. Gyno said that I would need to spend some time nude to allow enough fresh air. Towel drying is "bad." Take tylenol or advil, a slight/controlled overdose will not hurt, as long as it is not abused.Gauchos made it easier to not have any tight fitting clothing to aggravate the sores, and made it much easier to run around the house where I have a younger brother. Plus I didn't like the idea of locking myself in my room.I had gone through the herpes therapy of pills and the ointment was part of the therapy, it was zovirax. You may be able to find some other ointments that may be over the counter, get gloves, applying is messy.Avoid for a little while: tight fitting clothing, undergarments that are not cotton, bubble baths. While I am unaware if your daughter is menstrating, as I didn't start until i was almost 16, however others are starting at younger ages, some of my suggestions may not be very helpful- but i do suggest avoiding any pads that have a fragrence.Some questions: has been stressed recently, if so by what? Change in detergent? New clothes? -just tossing out possible things that may have been a change in her life.
    chicaespana2003 7 Replies
    • January 8, 2009
    • 05:15 AM
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  • Hi chicaespana2003,I too am having those same symptoms and have been "diagnosed" with genital herpes...all your symptoms match mine including the white patch on your vagina.I am awaiting swab results and will tell you the conclusion once i get them back.
    bubblybird 5 Replies
    • January 9, 2009
    • 05:14 PM
    • 0
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  • I don't have any answers for what is going on here. I do what to mention a source of "flying alien herpes". It isn't as likely to happen these days with disposable diapers. There are plenty of people walking around who had mothers with cold sores who put diaper pins in their mouth or were smokers. Diaper area herpes are not all that uncommon. I kid you not. If there is a history of "terrible diaper rash" it just could be herpes. While that is not flying aliens it is a cause rarely thought of.
    Freddd 3,576 Replies
    • January 9, 2009
    • 11:25 PM
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  • chicaI am sorry for the experience you had. I thought of something strange that happened to me when I was younger and later found out my mother had it happen one time in her life. It was an acid imbalance! It was very painful. I think it was found by fluke. The doctor seemed surprised as I was. I had to use some gel and it went away within a few days. Oh PH imbalance was what they called it. She told me it could have been a sensitivity I had from something as benign as a shampoo. Also gave me advice about other stuff that would cause this. It is easily treatable if that is it! Good Luck!
    stillhere 14 Replies
    • January 10, 2009
    • 03:44 AM
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  • Two more things, have you used anything in a bath? New bath gel? Allergy? Also if you shave could be a reaction to something on the razor from allergy to that lubricating strip to fungas or bacteria from being in a warm moist area like the hot shower. Regarding the shingles, you can be tested for inactive and active varicella zoster test which is chicken pox. I had to have that too. I tested negative on herpes swab and blood test and positive to varicella zoster when I had shingles on my face! Had them on my upper bottom/hip while pregnant so you never know and they "rarely" cross sides of the body but not "never" so just know there are still possibilities and you can recover from the ones I mentioned.Good Luck!
    stillhere 14 Replies
    • January 10, 2009
    • 03:51 AM
    • 0
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  • I had been using Herbal Essence's "Long Term Relationship" shampoo, but I had been using that for almost 2 months. Seldom do I ever take a bubble bath or draw enough water for a bath in the first place to shave my legs (usually I shave them standing up and once in a while I'll give myself the "luxury" of sitting down.) I rarely shave the area in between my legs- but my razor was getting a little old. At that time I had not done any grooming near that area.When I had suggested to my gyno that it might be shingles- he did everything he could to tell me that it didn't matter. I knew a blood test could be done at that time, but he was so... stubborn (for the lack of freedom to express how I truly feel) that he persuaded me with the notion that I had herpes and that was it.As to allergies- I am allergic to latex, discovered that one in a water ballon fight with some friends- yeah... that was fun. Since then I have taken great strides to avoid ballons, latex based paints and other latex products that may cause welts.For years I've been using a feminin wash that is for sensitive skin. I've never deviated from the brand.My sis-in-law thought that I might have had a cyst that popped and the "poison" may have caused the irritation, however, I would have thought that I would have more sores that I had and that when urgent care basically did a pap they would have seen something on the vaginal wall.-Blaze- Should I be worried if I have a history of having higher amounts of protien in my urine? Back when I had a physical to play tennis for my second year in college, they had noted that.I thank you all for your contributions to my issue.:)
    chicaespana2003 7 Replies
    • January 10, 2009
    • 04:47 AM
    • 0
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  • Some of these doctors (and not all) seem like bullies. At times people have their own reasons to make light of your situation. Maybe he has herpies and your reaction just reminds him of how horrifying it is to find out about.For some reason I felt the need to share that thought.I hope this is behind you and you never have to deal with it again.sh
    stillhere 14 Replies
    • January 10, 2009
    • 05:27 AM
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  • Typically, Stevens-Johnson syndrome affects the mucous membranes of the oral cavity, nostril, eyes, and both the anal and genital regions. It may or may not be associated with skin lesions elsewhere on the body. Oropharyngeal (mouth) lesions may be so intolerable as to prevent eating, and there may be recurring oral ulcers. Often, the skin lesions may look like a target-lesion (3 concentric zones of color change) or as bullae (bubble-like). i was told I had this once and the symptoms are quite similar...hope this helps
    bubblybird 5 Replies
    • January 10, 2009
    • 01:25 PM
    • 0
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  • -Bubblybird-After reviewing Stevens-Johnson syndrome, I do not believe that was the issue. I was never hospitalized, and my sores never were "target like."In general I would have to describe the size of my sores when they were first noticible were rice sized and white, and as the next time i looked they were in a "crushed velvet" stage and the size of a bean that you would use when playing "Don't spill the beans" and it appeared that the surface was that of crushed velvet. The sores were dark in color- almost purple.(Maybe I should mention here that I have had the Gardisil shots- and had completed the series Jan 08)I am unaware of any oozing because I was in so much pain, was not at my home at the time of being first diagnosed with vaginitis/bladder infection, also with the "transition" of the appearance of the sores I was on the medication for a yeast infection, which was a cream.
    chicaespana2003 7 Replies
    • January 12, 2009
    • 07:07 PM
    • 0
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  • After some additional research and speaking with an online friend, it appears that my 2nd diagnosis was correct. A yeast infection, however, since the diagnosis over a phone may be considered out of the norm, my recent discovery was that the yeast infection had a mutation, which made it hurt really bad, with the initial blister that would then turn into a dark velvet like sore, and fall off, leaving a scar.Keep eating your yogurt, and keep some plain yogurt handy the next time it ever comes around.
    chicaespana2003 7 Replies
    • January 27, 2009
    • 04:11 AM
    • 0
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  • A very similar thing happened to me. I had streptococcal (strep throat) virus on my vagina. It could possibly be what happened to you.
    Anonymous 42,789 Replies
    • January 29, 2009
    • 03:58 AM
    • 0
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  • Hi chicaespagna,I hope you are well and have everything undercontrol, I however have seemed to get worse, although I am getting closer to a diagnosis.They now seem to think I have Lichen Sclerosus, google this and see if it sounds like any of your symtoms, this is not a STD but a immune problem.all the bestbubblybird
    bubblybird 5 Replies
    • February 19, 2009
    • 01:53 PM
    • 0
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  • Bird-I have not had an outbreak since the initial outbreak, and I do believe my second diagnosis, yeast infection, was correct, although the yeast had mutated.To be honest, I never knew what a yeast infection was- let alone know if i've had one before. After my experience, I have taken the extra precaution to "listen" to my body, and wear cotton undergarments. I will still need to be aware of any flare ups, but at least I have a better understanding of the issue- and I'm going to have a supply of yogurt around!My thoughts are with you as you continue your quest for a diagnosis.
    chicaespana2003 7 Replies
    • February 19, 2009
    • 03:01 PM
    • 0
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  • Thanks for all this comments, i needed it coz my doctor told me i have herpes and ask me questions if my husband have herpes as well.. I dont want to believe her because for this just makes me feel devastated. I have those same sores that you've mentioned in my vagina and part on my labia as well. But my husband is healthy we've been together for almost 6 years and i am the not healthy one. I haven't had sex with anyone else except for my husband. I dont know how to talk with him right now as he doesn't know what am i going thru. anyways i had blood tests, swab tests and urine tests which returned negative. so i dont know what to think of right now.. two of the doctors(dermatologist and family doctor) that i went with insist that i have that disease. But i shouldnt believe it right away, i needed more tests. it's just not fair.
    Anonymous 42,789 Replies
    • February 19, 2010
    • 05:17 PM
    • 0
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  • If you're sure the docs r wrong about herpes then it sounds like a yeast infection to me. You can get blisters from a yeast infection/candida. See http://www.yeastinfectionadvisor.comIt's really insightful and they have pics of the blisters etc.Also, high levels of protein could indicate that you/she have/has mercury poisoning which could be the cause of the yeast infection.
    Anonymous 42,789 Replies Flag this Response
  • My gosh! Please tell me if you have any progress with this. I had a similar situation and I am desperate for answers.I had fever, aches, sore throat in may. 2 days later this red patch with two white centers developed. They weren't itchy, tingling or painful, as I wasn't aware they were there until I felt them in the shower. I was prescribed antibiotics that rid me of the fever and aches within 12 hours. The patch progressed to two raised ulcers within about two days. The next day, these ivory white growths, slightly tinged green in the center sprouted, and that's finally when I experienced pain, but only when urineor soap made contact with them. That same day the reddish patch around them disappeared and there were these fungal polyps looking growths sprouting out of tears in my skin. There was no fluid and they didn't appear fleshy or rough. They looked as if they would disintegrate if you squeezed them. Thinking they reminded me of yeast, I took a dose of diflucan. Later that day, they stuck to a piece of toilet paper and came off, one with a little spot of blood. After they came off I saw that the lesions were filled with a white substance. 2 days later when I got home and was examined, my doctor said it was already healing. He doubted it was herpes because the entire episode was less than a week and a half, and it didn't look like a typical outbreak. Unfortunately I tested igm positive for hsv (non type specific) twice within the span of 2 months. I know igm is unreliable, and I am igg positive for chicken pox, ebv, cmv, and hsv type 1, all of which I've heard can cross-react with the test. I thought it was strange that even though the gyn predicted the igm might be gone by the time I got tested again, it was still positive, and at almost the same exact value.Any insight?
    janedoe99 1 Replies Flag this Response
  • Man oh man, If i could have a dollar for each time i heard a new remedy for herpes outbreaks i would be rich. The thing that i have found to keep outbreaks away! Is astralagus root, it is an herb its cheaper than valtrex that i take everyday to prevent myself from giving it to people i sleep with, which has only been two people since i had gotten the results back from the doc. I know that if you keep your immune system up, the daily stress that causes outbreaks is well managed by your own body. less stress less outbreaks. high immune system less outbreaks. i cut out all chocolate, no nuts, less caffiene. all these things weaken the immune system. which inturn causes outbreaks. If i have ever heard of anyone getting am outbreak its best to keep it dry. panty liners and baby powder works the best (so says my bff) The astralagus root works! I know, I have recommended it to 30plus people on a herpes datting website it works wonders for all of us.
    Anonymous 42,789 Replies Flag this Response
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