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Test Result Confusion
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Test Result Confusion

***Sorry if you've read my background story before, I've posted questions already.  Because of this I'm going to put as few details as possible, but there’s still a lot. If you dont want any background at all, skip down to where the asterisks start.  Or if you just want to read my questions, I separated them at the end :) Thank you very much! If this is more suited to the STD forum or Women's Health, please let me know.***

I'm asking here, but I also plan on asking my PA... However my office is 40 mins away and slow to respond to phone questions.  They also told me that they dont have a lot of experience with STD issues (its in a really upscale area of town with a lot of soccer moms and that kind of thing)  That REALLY pissed me off because I was already terrified about what was going on downstairs, and she made me feel really dirty and ashamed.   I'm also planning on getting a second opinion, just in case.

Anyway... in September 08 my boyfriend and I had rough sex.  After I felt like I had a cut at the back of my posterior fourchette.  A few days later I developed a terrible yeast infection, and was scratching like crazy!! Not long after that I noticed the fissures- two long ones on either side of the posterior fourchette.  I noticed the fissures on a Saturday, and bought One-a-day Monistat.  I was so swollen that I couldnt even insert the ovule properly, I also used the topical cream all over the entire area, and not long after the smaller circular sores appeared.  So I assumed the Monistat cream made it worse, and I do have insanely sensitive skin. The sores appeared over about 4 days or so, were TERRIBLY painful to walk or pass urine, and the one time during the whole episode I dared to poo there was a lot of blood.  I went to the PA on Monday.  

After TONS of drama with getting my test results (first they werent in, and then they had been in the office for a week, and then i was clear of everything, and then wait never mind I have genital HSV-1, and a few weeks later Oh by the way you also have a Strep B infection!) I was told my blood tests came back negative, but my culture came back positive for HSV-1.  There were no other issues/STDs/etc.  My boyfriend’s tests came back negative for everything except HSV-1, so we assumed it was a primary infection.  I was taking Acyclovir 3x a day at 800mg for 3 days, and my symptoms only got worse.  At that time I bought Neosporin + Pain relief, just so I could deal with the pain.  I applied it twice, and the next morning my sores were half the size.  The PA said it was just a coincidence to the Acyclovir finally kicking in, and to not put that on my sores next time.  

Last month I started thinking I was getting prodromal symptoms (redness and itching) for my first recurrent OB, so I called the PA to get Acyclovir.  (Note: I was just being paranoid, those "symptoms" never progressed) I also asked the desk assistant to read me my results again (because I got a different story every time in September) and she told me the PA’s notes said I was negative for both HSV types in my culture, but positive for HSV-1 in my blood test.  I asked to speak to the PA because of the insane contradiction and to have my results physically sent to me.  We discovered that the PA had transposed the notes, and that the test results were actually the way I was told in September.

****First Tests at Primary OB: *****
HSV-1 IGG antibodies: 0.14
HSV-2 IGG antibodies: 0.17
HSV type sensitive culture:  Positive HSV-1, negative HSV-2

I wanted to get a follow up blood test to confirm everything, and the PA had it ordered, but I didnt go in for a few weeks because of the distance. Also someone told me lab orders can expire, so I didn’t think I could use it.  I saw a different Dr at the practice yesterday for my Adderall (adderrall) check-up, and he is a "herpes expert" and refused to order a follow up blood test because I was being "irrational" and a positive culture means I have herpes, no matter what.  I checked and the lab order from the PA was still available, so I got my blood test done yesterday.  I was pretty sure it would confirm the original diagnosis of positive genital HSV-1 because I am currently having the same symptoms as the first time.  On March 14th my boyfriend and I had sex and I was pretty dry, but we didnt have lube on hand *ouch*.  I was sore for a few days after, especially on my posterior fourchette.  We kept having sex so I never really gave myself time to heal, but on March 19th my boyfriend told me he had a yeast infection.  He said it was because of the friction from the dry sex.  We fooled around some this past weekend, and had sex with condoms twice.  I was still sore and sex was pretty painful.  On March 22 I noticed the same two lateral fissures on either side of the posterior fourchette.  By the next day (my Dr's appointment, ironically) The fissures had grown in size, and there were a few small circular ones in the same area.  I started my Acyclovir (800 mg, 3x a day, like prescribed for my first OB).  Today I saw two bumps that are higher up than the sores.  They are skin colored and look almost like bug bites with either a light top or a dark top about the size of a pinprick. I called the Dr's office today to see if there was any way my results were in, because I was SURE at this point I had herpes, and I just wanted to see it in writing.  The test results HAD come in and they were reviewed… The PA said I'm negative!!!!

Second blood test- over 7 months after primary infection and diagnosis
HSV-1 IGG antibodies:  0.55
HSV-2 IGG antibodies:  0.23

Questions:
1) I know a false negative blood test is more common than a false positive culture, but considering all the issues (like the fact that my patient ID number was different on my culture, admitted inexperience by the PA, etc) is it possible that I dont have Herpes at all??

2) Should I go in for a re-test again?  How long should I wait?

3) Do herpes lesions grow in size?  They look like canker sores kind of, but they get larger in diameter.  When the first OB healed, the sores just shrunk in diameter/depth, never crusted over.

4) If its not herpes, what is it????  I was almost disappointed to hear it wasnt herpes, because I've had 7 months to deal with the fact that I "have" it, I just needed to confirm and find ways to deal with or prevent it.

5) Is it possible that if I was currently in an OB, and had already taken 800mg of Acyclovir before the blood test, that I could have messed things up?  


I’m planning on going to Planned Parenthood in the morning, because they deal with STD’s all the time, so hopefully they’ll know whats going on.  I’m scared to put anything on the sores now because I don’t want to mess up a diagnosis.  I also stopped taking the Acyclovir.  Any advice is appreciated.  Thank you so much for reading all this!
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11 Comments Post a Comment
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101028_tn?1348750963
It's easiest for you and me both ify ou just keep adding to your original post here on the forum. Would've saved you a lot of typing.

You have hsv1 genitally. You know this from your lesion culture that was hsv1+. there is no need for any additional herpes testing since you know this is what you have.  Even the best blood tests still miss 1 out of every 10 hsv1 infections so a negative blood test now doesn't mean you don't have hsv1.  Once again - you had a + lesion culture.

Were you also tested for yeast and bacterial infections vaginally at your doctor's appointment for this latest round of symptoms? I would continue to take your acyclovir to cover the herpes part of this.  For recurrences it's either acyclovir 800mg 3x/day for 2 days or acyclovir 400mg 3x/day for 5 days. Both heal lesions at the same rate.

grace
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My doctor told me that there was no point in looking at these symptoms since I already had a positive culture once.  Honestly, I think its because I was there for the Adderall (adderrall) and he was running late with his patients and didnt want to take the extra time.  He flat out refused to authorize tests because I was being "irrational" by wanting to double check. I didnt even necessarily want the follow up blood test to keep trying to rule out HSV-1... I just wanted to be 100% sure thats what I have so I can deal with it properly.  For the handful of people who have been at my side this whole time (including my boyfriend, who is a PA himself) no one understands how it was possible for the doctor's office to have told me so many contradicting stories last September.  Everyone thinks its too weird to have all of the issues with the office that I had all at the same time.  Occasional slip ups are expected, because after all they're just people, but there are multiple inconsistencies.  And I really dont think its irrational to want to confirm the diagnosis, considering what happened, and considering that the diagnosis is a lifelong infectious disease that could affect other people.  The doctor I saw this week is unaware of all the issues, so I could see how he reacted that way.  Still, I dont think its professional to tell a patient theyre being irrational when they want a confirmation (not even a second opinion)... unless they're one of those people who test themselves every 6 weeks because theyre convinced they have an infection when they dont.  Plus the doctor who diagnosed me suggested a follow up blood test to confirm.  

I'm still going to Planned Parenthood in the AM for a full STD screening and yeast and bacteria and anything else related.  If they do another IGG blood test for herpes (which I assume they will) whats the chances it comes back negative again?  Are false negatives due to my blood, or due to testing error?  Everything I've ever seen says wait a few months and then come back... but since its been over 6 months I should have already built up all the antibodies right?

Also- do herpes lesions grow in size?  Like in diameter, etc?  I dont have the typical blister symptoms, just the ulcer/fissure/canker sore looking ones... would they get wider?
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101028_tn?1348750963
You've seen the lesion culture result report with your own eyes. I'm sure with all the mess ups you've been thru with all of this a small part of you is still harboring some doubt about it but really no reason to doubt that your symptoms at the time of the culture were due to hsv1.   Additional blood testing is not going to be helpful for you to be honest since even if it does eventually pick up hsv1, it only tells what you have and not where you have it .  If you want to know if what is going on now to know if this is  related to your previously diagnosed hsv1 genital infection or not, a lesion culture of active symptoms is what you need but it needs done within 48 hours of the start of symptoms as well as before you start acyclovir so at this point it's too late for that with his batch of symptoms.  It's more than likely to result in a negative for herpes at this point which I think would just add to it all at this point for you.  

Following up in the morning to get tested for yeast and bacterial infections genitally is a good idea.  Just one of the fun things about being female ( that was sarcasm ).  I think it's important to remember that just because you have genital herpes, doesn't mean that everything that goes on down yonder is due to herpes so following up on it is in your best interest.

grace
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The doctor at the clinic today looked and said that my sores are typical of a severe yeast infection... or herpes.  Lol! Way to narrow it down! He said I need to stick with my positive culture result from September, regardless of what any other tests say.  He was willing to do another round of tests so that I would be assured of my diagnosis.  He did the culture of the sores, which was painful!! He ground the swab so hard that both sides started to bleed!  Then he did a wet mount for yeast, and also a chlamydia and ghonnerea (sp?) swab.  I asked him to also order a HIV and syphilis blood test because my dr did not test me for those last time.  We're trying to cover all the bases.  He said that the blood test was not "wrong", it just means I still havent built up the antibodies.  He told me I could retest my blood in 3 months if I wanted to. If I get a second positive culture, I'm still going to do the blood test.  Not because I think the tests were wrong, but just to make sure I'm developing antibodies properly.  There's no reason for me to be developing antibodies like someone who is immuno-compromised.  

He called me 2 hours after I left the office to say that he had already received a positive for my yeast culture, and I definitely do have a yeast skin infection.  He said if I dont hear from him in 10 days, my viral culture didnt pick up any HSV... but definitely said that it doesnt rule out HSV.  I told him how much acyclovir I had taken already and the time frame of the sores, but he still seemed pretty confident that he could get a good sample for the culture.  

I honestly dont know what I'm going to do if the culture comes back negative... All I want is a definitive answer... The news of "having herpes" isnt an issue to me anymore, I just want to know!!

But yes, a small part of me is still holding out for some human error on the part of the first culture.  However unlikely, it is possible, because people do make mistakes :)  But if I get another culture, I'm not going to be irrational and pursue this anymore.
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101028_tn?1348750963
Yeast can be a booger :(   I've seen it really cause some nasty rashes in the genital area that can take awhile to heal :(  I assume they prescribed something for it for you?


I'm glad thisprovider is covering the bases better for you in general it seems.

Not testing + on the herpes igg blood tests has absoluely nothing to do with your immune system.  The tests onlylookat certain  parts of the igg response to  hsv ,  everyone 's body is different so some folks  do not test accurately on the blood tests we  currentlyoffer  which  is   why we prefer lesion culture results when we can get them  especially with hsv1.

grae
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Avatar_n_tn
Yah he prescribed me a Fluconazole tablet... and told me to start up again on my antivirals, but I havent yet.  I took the Fluconazole yesterday around 6pm.  

After he did the culture and the sores were bleeding, it hurt like hell to pee.  I was a little upset about that because so far all the pain had been bearable, but after those cultures it hurt to walk and was excruciating to use the bathroom!

By 1am it no longer hurt to pee :) so I was stoked because it was moderately painful before the culture, and very painful after the culture, but now nothing.  I looked at everything about a half hour ago and its completely different than it was yesterday!! The biggest sores are all but healed up, the red rash looking part is mostly gone (I was sure that at least this part was yeast and not herpes tho, so that makes sense), the swelling is completely gone.  There is a little crop of what looks like tiny pimples that has appeared, and is the closest thing I've seen in pictures to what an OB actually looks like.  But they're painless and have white heads, and are 1mm in diameter or smaller, so I dunno what that is.

If the culture comes back negative (either due to the antivirals I had taken 2 days prior, or just the fact that the sores werent new enough to be cultured), should I ask for a WB next time I get my blood tested?
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101028_tn?1348750963
If you feel the need to blood test again, the WB would be the preferred blood test.

Don't hesitate if you aren't feeling 100% down yonder by the end of the weekend to call monday for another diflucan tablet or you can use an otc yeast treatment too.  Sometimes it takes more than 1 round especially if you've had it for awhile.

grace
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SOOOO I got my test results back today from the clinic: Negative culture!  The only thing I tested positive for was yeast.  He said he couldnt comment on my positive culture from September, but he believes that this infection was a violent reaction to yeast.  He said its possible that my bf carries a particular strain of yeast on his skin that I'm allergic to.  He said that since my symptoms were the same as the last time, that it is highly likely that I am experiencing the same issue: a horrible yeast infection.  He said that some of my smaller sores DID look like herpes, but since I had no other symptoms, and that they disappeared within 24 hours of taking an antifungal, they were probably just yeast.   He said that "sometimes yeast looks like herpes, and sometimes herpes looks like yeast".

An hour later my regular Dr's office called me and I talked to the PA who diagnosed me.  She said that the entire office discussed my test results and it is their opinion that my culture from was a false positive!! They said that it is unlikely that I have ever been exposed to the herpes virus because I have not developed any antibodies.  She said that it is their opinion that I am negative for herpes!!

I'm going to do one more blood test in 3 months just to double check, but two sets of doctors have pronounced me negative!!! And said that it is highly likely that my September culture was a false-positive!!

I'm so excited and relieved!!! I think I might cry from all the stress I've been under for the past 7 months!
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101028_tn?1348750963
The only way your lesion culture was wrong was if it was mixed up wtih someone else's.  You won't be hsv+ on the culture, which requires actually growing hsv in the lab and not really have it.  More likely scenerio is that you have hsv1 genitally and also have a yeast issue.  

Do not hesitate to post your whole situation for Terri Warren on the herpes expert page if you want another opinion on this whole thing. You have to pay to post there but she's tops in her field.

grace
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Avatar_n_tn
why would doctors tell me i didnt have it if it was "more likely" that i do?  why would they not take the 'better safe than sorry' approach?  considering now, if i have issues in the future, i would no longer look to an antiviral treatment.  i also, now, would not need do disclose "herpes" to any future partners. Since the official diagnosis is negative.  WHY would two sets of doctors believe that was ok?

no offense, but you havent seen my charts or my symptoms.  one of the doctors in the practice that had diagnosed me in september IS an expert in the field, and holds conferences and classes on herpes.  it is also his opinion that there was a mix up in the lab.  

OBVIOUSLY its impossible to grow something from a culture where there was nothing present to begin with, I'm not a moron.  If you ever really looked at any of my posts, I have acknowledged that if my results were wrong it would be due to HUMAN error.  And thats what the doctors who ran the tests told me.  We arent sure what happened, if it was cross-contamination, or if the cultures themselves were mixed with someone else.    

BOTH sets of doctors have told me that they dont think I have it.  EVEN the doctor who told me at first that a negative couldnt rule out herpes.... he went back on that statement.  

Therefore it IS possible to have a false-positive culture.  I was told I was positive, yet I dont have it.  

Also- if you look at research and clinical trials for viral cultures, you will notice that there are always one or two cultures who are given a false positive, regardless of the sample size.  

If I sound a little defensive, its because I am.  Just because you're a part time moderator on an unofficial forum, doesnt mean you know more than 5 doctors who are familiar with my case.  
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207091_tn?1337713093
5 doctors have not been able to come to any conclusions on your hsv1 status, and you are insulting Grace?  

The fact is that you had a positive typed culture.  As Grace said, you don't even need a blood test.  You had the gold standard - a positive, typed culture.

Just because you have other things going on, it doesn't erase the hsv1 culture.  I understand you haven't tested positive on a blood test, but I'm not even sure why you are still testing.

If I sound a little defensive, its because I am.  Grace (and other community leaders) put a lot of time and effort into their forums, and they do it for free, on their own time.  You don't have to like her answers, but there is no call to be insulting.  You asked for her opinion, several times, I might add.

Aj
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