I was hoping that someone could help me sort out some conflicting test results, and figure out the likelihood of a lab error vs. the likelihood that my boyfriend and I are just INCREDIBLY abnormal and unlucky.
My boyfriend is the first (and only) person that I have ever had any kind of sexual contact with – he’s even my first kiss. We’ve touched each other, but we have not had had sex yet (not even oral). He has only been intimate with one other person, more than two years ago – and while he did not have oral or vaginal sex with her, they did have some limited skin-to-skin contact. Neither one of us has ever had a cold sore, or any genital symptoms.
In January, I went to the gynecologist because I was very itchy, and suspected that I had a yeast infection. The PA who examined me saw a very small area of "irritation" (which I hadn’t even noticed), and insisted on testing me for herpes in addition to yeast.
To my surprise, the herpes test (PCR swab) came back positive - for both HSV-1 and HSV-2. The PA insisted that PCRs often have false-negative results, but NEVER have false-positives. Although she admitted that it sounded far-fetched given my history, she said that my boyfriend must have herpes, and that it must have spread to me via our hands.
In the meantime, I had also tested positive for a yeast infection, which was successfully treated within a week with Diflucan and Monistat. Within a week, the initial itchiness was gone, and I had no other symptoms.
At that point (4 days after the initial test), I had another PCR done, as well as a blood test (for IgG and IgM). Everything came back negative, but we assumed that this simply meant that I had a new infection, that my body was already successfully fighting it, and that my IgG would be positive within a few months.
Based on what the PA had told me, I assumed that my boyfriend had given me herpes but didn’t know that he was infected. I figured that he either had caught it from his ex, or that the folliculitis on the back of his neck, which had been diagnosed years ago as non-contagious folliculitis nuchae keloidalis (and which he had been scratching a lot that week), was actually herpetic folliculitis. We had a very difficult conversation, and he agreed to ask his doctor for the Herpeselect IgG test.
However, his IgG test came back negative – and nearly 5 months later, my blood work is still negative too. I’ve read dozens of articles in medical journals and in immunology journals, and I know that many people seroconvert within 25 days, and most seroconvert within 3 months, but about 10-15% of infected individuals never seroconvert.
At this point I don’t know what to believe, because every possible scenario is extremely unlikely. Even if my boyfriend DID have genital herpes, it’s incredibly unlikely that he would have passed it on to me, given how careful we’ve been so far. Even if the folliculitis on his neck was misdiagnosed and is actually herpes, it’s unlikely that we would BOTH be in that 15% of the population that doesn’t seroconvert. If he DOESN’T have herpes, I can’t imagine how else I could have possibly gotten it. However, I also know that PCR tests have extremely low error rates.
My gynecologist (who did not actually examine me) keeps insisting that the PCR is never wrong, and that my blood will test positive eventually. The PA insists that there were no clerical/specimen labeling errors on her part (mine was the only PCR sent out that day), but that the sample could have been contaminated in the lab. The lab is insisting that they have the most state-of-the-art PCR method in the country, and that the chance of contamination is non-existent.
This entire ordeal has been an emotional rollercoaster for both me and my boyfriend, but at this point I don’t even CARE if I have herpes or not – I just want a definitive answer either way. We’re both planning to get re-tested in July (which would be 6-months from my supposed “primary outbreak”), but in the meantime, is there any other test(s) that we should ask for? If the Herpeselect IgG tests continue to be negative, is there a point at which we can just assume that my initial PCR was wrong?
In case it helps, here’s a summary of our results so far:
1/10/11 – positive candida albicans
1/10/11 – positive HSV-1 and HSV-2 via genital swab PCR
First off WOW this question really is good. I want to let grace chime in here on your lab results and by no means am I trying to read and interpret them because I am not trained like she is. Thus while my advice is being given take her advice on your lab work as the final straw and NOT my saying it is one way or the other.
Your PA is sadly wrong :( I hate saying that about PA's because well I wanted to be one. So as I sigh deeply I want to talk about the PCR testing. PCR testing does have a FALSE Negative and a FALSE POSITIVE rate. Every test in the world does. PCR though is more sensitive for HSV than any of the testing we have. But it is still subject to the same parts to every test.
The fact you tested positive for BOTH of the viruses makes me question the test. Here is why. At this point you have to be honest with yourself and us. I am taking you at your word that basically you are a virgin. By that word I mean no Oral, Anal, or Vaginal sex at all in your life. If that is the case then this test is way off.
Here is why I said what I said above. HSV-1 genital is common with people who have had oral sex from a partner who has HSV-1 orally. Yes it can be spread from genital sex as well but most of the time that is where we see HSV-1 genital is when a partner has oral sex. You haven't had oral sex.
HSV-2 orally is rare so you not having oral sex again knocks out HSV-2 from an oral location. You not having any sexual direct skin-to-skin contact genitally knocks out your HSV-2 as well in the genital location.
With that all being said let me explain why I said what I did. HSV is transmitted from direct skin-to-skin contact with a person who is shedding the virus or as an active outbreak. IE: having oral sex with someone who is having a cold sore can lead to transmission (unless say it was on a male who was wearing a condom and their partner with the cold sore performed oral sex. No direct skin to skin contact no risk of HSV transmission at that point). Hand to genital transmission is hard because so much plays into the transmission process. First the virus needs heat and friction to be massaged into the skin then you need enough virus on the finger to lead to transmission. To many variable there and thus why we say it doesn't happen.
So with all of that being said you just kissing the guy doesn't mean if he had HSV-1 that you got it in your genital location. So the question is YOUR RISK. What is your risk here? Being a virgin really means you have had no risk here. Your PA/Doctor not taking that at face value is hurting. Furthermore your boyfriend has had a negative IgG test (for the future cease using the IgM testing. It is worthless and per the CDC 2010 guidelines NOT to be used on adults for HSV testing) which as you said would be rare for both of you to test negative. HSV-1 tends to seroconvert faster. If your immune system was fighting the virus typically you will see the antibodies.
Now you wouldn't test positive by PCR unless you were shedding the virus or had a lesion to swab. Doesn't sound like you did so the second pcr was accurate I would say.
Now your labwork is showing you are negative (Using your words and I am sure grace will say the same but again remember what she says about results is going to supercede what I say.). After 12 weeks if you haven't tested positive at this point on either of them I find it hard to believe you have HSV and would be myself more inclined to suggest a false positive issue than a true positive. Be it lab error, human error, test error, or whatever the case maybe.
Now the options here that I can think of and you know quite honestly I think this is a strech but I am again going to disclaimer what grace says is to overrule my suggestions. Would be getting a western blot done. The western blot is the gold standard for HSV (I bet your doctor will say that it is only for HIV or something but there is actually a Western Blot for HSV). This test is what we compare everything against for HSV testing (including the PCR testing). While even that test can miss HSV infections it doesn't really. But like I said I think that is really not needed but given your situation and the strain on your relationship having that piece of mind may help you both.
While I am not a relationship counslor (nor do I play one on TV and no I didn't stay at a Motel 8) I would like to suggest this. I say this out of personal knowledge and experince (in all honesty I was divorced after 4 years of marriage and had a 2 year relationship end pretty badly). You guys need to not be upset with the other. Yes this is stressful and learning what is going on at this stage is truly beside the point. Does it change who the both of you are? No it doesn't. The overall thing is that in your relationship which I am sure you either know or you will learn down the road is that there is and will be bigger and harder bumps than this. You are still the people you fell in love with and most of all a microsopic bug isn't going to change you. I am glad you came here to get answers. Keep talking to us and show this to your boyfriend. Let him know you are getting help from people who are knowledgeable in this subject.
Thank you very much for your responses! How would I get in touch with Terri Warren?
Mistakeguy, your answer makes me feel as if I'm not crazy for wanting to pursue this further :-)
I have no reason to lie about anything - I want a definitive answer so badly, at this point I'll discuss my entire sexual history (or lack thereof, as it were) with anyone and everyone - including two different reps at the lab who repeated "we have the most advanced PCR in the country; I'm very sorry, I feel very bad for you, but you have herpes" ad infinitum.
I'm not sure what my gynecologist thinks of my latest IgG results - the last time I saw her was at my annual appointment (before the blood test), at which point she basically said "PCR is never wrong, your boyfriend's test is going to be positive, yours will be positive eventually. Stop being in denial." It really did hurt, because she's choosing to believe one test result over my self-report. I'm sure plenty of patients do lie, but I have no reason to do so here. Everyone who knows me knows that I care about my health more than anything; I'm pretty much the least-likely person in the world to lie to a doctor.
It's really starting to make me feel crazy, because I know that I have no risk factors, my boyfriend's risk factors are very low, and I've now found several articles in different medical journals detailing all of the things that can go wrong in PCR. I've even found letters from doctors that have written in to journals saying "yes, PCR is accurate 99% of the time in research studies, but I've found X number of errors in my practice." Yet even when I'm armed with all of this information, my doctor and the lab still refuse to believe that there's even a 1% chance of error.
I'm starting to think that regardless of whether or not I have herpes, I should probably start looking for a new doctor - although I've heard from multiple sources that my current doctor is the best in the city :-/
Anyway, at this point, do you think I should ask my boyfriend to get a PCR swab done on his neck? I know that's a long shot (because if that were herpes, then he would have the antibodies, right?), but I want to be completely sure. I'm even starting to wonder if I should get tested for a specific immunoglobin deficiency, just to be completely sure that there's no other reason for me NOT to have antibodies, other than not having herpes!
Terri Warren is our Herpes Expert and her forums you do have to pay to post there. She also does phone consults as well and you can work with her office as well. But I would say of all things following up with her is the best thing you can do. She is an expert as well as a NP that knows a lot about herpes. You can find her clinic site at: http://westoverheights.com/ and the Herpes Expert Forums at: http://www.medhelp.org/forums/Herpes/show/339 Like I said you have to pay to post there but honestly I think the cost is well worth it when wanting an answer and nothing will beat an expert answer.
I like the part about the lack of sexual activities that made me laugh. It is true and like I said I rarely doubt people on the forums here because let's face it you don't know me and I don't know you. So it is easier to "open" up when you don't know the person/people. I know that sexual stuff is more or less suppose to be private so I am glad to hear you say that you are being open. So unlike the TV Show "House" I doubt many patients "lie" when on a forum such as this and in your case I believe you wouldn't lie.
I think your doctor/PA needs to go through some STD CE classes and needs a few Herpes CE classes as well. Sadly to say that they don't want to believe you. I don't know if it makes you feel better but I do. As does I am sure grace because of the route she is sending you.
Doctors sometimes don't really know when to believe someone or not. I mean of anyone your gyn is someone who should really know about your sexual details (or as you say lack thereof) and thus honestly should be the one trying to help you figure this out. Maybe she doesn't know about your bf's results. I don't know I won't defend or argue her side.
PCR swabs are good for when an outbreak is present to which one is curious of. Asymptomatic shedding (viral shedding with no symptoms present) is a random thing you never know when you are shedding the virus. The fact you would swab and PCR it means that if the virus wasn't shedding (and I mean assuming this is HSV which we don't know it is nor have proof it is) will come back negative. It's a waste of time and money.
Finding a doctor that will listen to you is hard. I have a female friend of mine who has gone through 12 doctors before she found the best family doctor to stay with (whom I suggested she see) and I am in a city that doctors are not really that big in. You find them more in the clinics and they are mostly walk-in at that too.
You are not crazy for wanting answers and questioning this. It is resonable to do in all honesty. If you came with a positive culture and a negative igg test I would say you most likely have HSV. But in your case you have a lot in your favor of questioning. I think you will find Terri will knock out your question and she is an awesome person.
I just thought I would post an update, in case anyone is curious, or ever finds themselves in a similar situation:
I never seroconverted (IgG was still negative at 6 months), and my (now ex) doctor finally called me to say "oops! must have been a false positive!" - but couldn't tell me anything about what had actually caused my symptoms in the first place. When I showed up in her office and pointed out area of irritation similar to what the PA had diagnosed as herpes, she said "that doesn't look like herpes, but I don't know what it is."
When I finally got in to see a specialist, he said that false-positive PCRs occur more often than the average doctor realizes, and (as gracefromHHP pointed out) having the same swab come back positive for both 1 & 2 is extremely unlikely, even in people that actually do have both viruses. So basically, he would have taken the original PCR with a grain of salt based on that fact alone, for any patient, no matter their sexual history.
My actual diagnosis ended up being lichen simplex (basically, eczema!), which responded immediately to cortisone cream. Why both my original gynecologist and her PA were unable to accurately diagnose eczema, I'll wonder for the rest of my life.
Thank you to everyone who responded to my original question - your advice helped keep me calm during a really terrible year!
Thanks for your follow-up. As many people already told you, a positive PCR swab for HSV1 and HSV2 is not plausible, specially with your sexual history. Have you ever actually seen such result on paper? I've seen people from the medical field reading results incorrectly, that's why I ask.
Yes, I have copies of all of my test results, and the PCR definitely said that it was positive for both strains.
After reading close to 50 articles in various medical and immunology journals, I know now that that's a possibility - e.g., if the PCR equipment is contaminated. However, it's not a REALISTIC result - my first doctor SHOULD have looked at those results and thought, "hmm, it's not possible for the same lesion to be shedding both viruses; something's not right here!"
The problem is that she has been trained to believe that PCR is some kind of miracle test, which can't ever be wrong - and at the time, I knew absolutely nothing about herpes testing, so I didn't know any better other than to believe her. On the bright side, I've learned enough about STD testing in the past year, that I could probably find work as counselor at Planned Parenthood!
I know what you mean, it's pretty funny to see the wrinkled faces when you tell the doc they are wrong on test information... Although I'm sure they are used to hearing all day long, "but doc, it said this on the Internet.". Nice work using journals as your reference and I'm really happy to hear you're in the clear!
Thought I'd give another update, since I still get occasional private messages asking about my symptoms.
Final final final diagnosis: Recurring cutaneous yeast infection!
Over the past year, the lichen simplex kept recurring, but always responded to the high-dose cortisone cream. I eventually got a biopsy done, to rule out anything scary (like cancer or precancerous cells). The biopsy definitively ruled out herpes and confirmed LS, but didn't show any underlying cause for the LS.
I've also had a few vaginal yeast infections, but my doctor (the specialist whom I now see) initially didn't think that was what triggered the LS, because he had prescribed me oral fluconazole, and I subsequently tested negative for yeast.
However, since my skin issues had been going on for so long, on a whim we decided that I should try topical anti-fungals (OTC Lotrimin) applied directly to the LS. My doctor said it's possible to have a yeast infection of the skin even when vaginal swabs come back negative for yeast - and that even with known skin infections, tests for yeast often come back false-negative.
I tried the Lotrimin, and my symptoms COMPLETELY DISAPPEARED OVERNIGHT.
I'm so happy to finally have an answer, and can't believe that it was so simple!
tl;dr: Yeast infections of the skin are difficult to diagnose, and don't always respond to oral medication. To a poorly-trained physician's assistant, this looks like herpes. 2.5 years of expensive medical tests and emotional distress end with a $7 tube of athlete's foot cream.
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