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Recurrent, long-lasting herpes outbreaks
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Recurrent, long-lasting herpes outbreaks

Hello,
  
   Earlier this year I developed a red, itchy rash in my pubic hair. The doctor told me it was probably an allergic reaction and put me on cortisteroids, which didn't help much other than bringing the redness down. I was told that it was probably a nickel or cobalt allergy, and given an allergy patch test. However, the test came back negative. At that time I was getting small clusters of lesions that would start off as redness, turn into vesicles, then scab over. The problem was that as soon as one lesion would scab over, another would form. This went on for about two months.
  After the last of the lesions healed, I had about a month and a half with no lesions. However, I did have some mild redness and itching at the same site during this "clear period", but that would come and go.
  After a month and a half with no lesions, they came back in the same place and I went to the doctor again. This time I went to another doctor, who seemed convinced that it was not an allergy, but herpes. I requested that he do a zanck smear. He looked at it under the microscope for at least 10 minutes, and didn't seem very happy with it. He said things like "this is not a very good example of a herpes smear, but I can see some signs that it is herpes". He put me on zovirax. I took the meds, which didn't do much, and I was still not completely convinced about the diagnosis.
  That was about a month ago. The lesions that he saw are almost completely healed, but now new lesions are forming, just like before. If my previous outbreak was any indication, I have at least another month of this to look forward to. I really don't want to go back to the doctor because they all seem to be acting on assumptions and not trying to recognize that my case is not exactly normal for HSV (at least in my opinion).
  My question is this: Is it possible that these lesions take a month to heal, then form new lesions with little or no reprieve, dragging on through two months or more? When I'm "clear" should I still have redness and itching in that area?
  I will admit that these lesions do look like herpes. They itch, they hurt, and they follow all the stages normally associated with HSV. But the severity and duration seems unusual.

Thank you--
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101028_tn?1348750963
You can't accurately diagnose herpes based on a tzanck smear. It's a very outdated and inaccurate test and isn't recommended to be used as the only way to detect herpes any more. Your doctor not sure of what he was looking at either does not inspire confidence .

Herpes does not typically take this long to heal.  Even if you do get a type specific herpes igg blood test and it is hsv2+ it doesn't mean that this is all herpes related. I recommend that you follow up on this with a dermatologist for a further work up.  If you need help with your herpes blood test results feel free to post them here.

grace
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Thank you, Grace. I was turned away from taking the blood test by the dermatologist, who insisted that knowing if it was type one or two would not make any difference, and that it most certainly is herpes. He also said I need to take better care of myself so that my immune system doesn't get beat down so much by this virus. I guess that's good advice for anyone.
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Avatar_m_tn
Bull, you need to get this tested and confirm with an IGG Test if it is HSV 1 or 2 if it is HSV at all. Professional STD Dr's misdiagnose Herpes so you need to get this Dr of yours to do a blood test to confirm what you have here!!!
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101028_tn?1348750963
You need to find a dermatologist who is more sympathetic and not so behind on herpes that they think that it's just from not taking care of yourself properly :(  

Are you in the US? If so we can help you find a place to get a herpes blood test on your own so that you can answer the question of do you have genital herpes or not.  Keep in mind though my original advice - if this is herpes - you have more than just herpes going on.  

grace
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Avatar_n_tn
Ok, maybe I will follow up at another hospital. The thing is, if I test positive for HSV-1 it might not mean much since most adults have antibodies towards HSV-1. However, the doctor will use that as confirmation about what he already thought.
Oh, and about my status, the lesions are still here and there. Going on two months now (for this outbreak).
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Avatar_n_tn
One more thing that I think is important to point out is that although Grace says there is probably something else going on, I am finding it hard to imagine what that might be. Although I did not request an RPR, the lesions are clearly not related to syphilis so I'm pretty sure I can rule that out. I am well aware of what warts and molluscum look like, and it isn't that. I know what to look for with scabies, and it's not that either. As I said before, my patch test was negative, which pretty much rules out any kind of allergic contact dermatitis, and my KOH was also negative, so it's not fungus.  
If anyone is aware of any other likely differential diagnosis, please let me know.  
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101028_tn?1348750963
The patch tests look for allergic reactions, not just skin sensitivities and they also don't cover everything.  I laughed when I got allergy testing done a few years ago - came back negative for everything even though certain metals cause me to have reactions and there is a huge list of products I have to avoid.  The derm doc just looked at me and told me she told me so that the testing wasn't going to be too worthwhile but we had to cover our bases.  

MRSA is  HUGE issue right now and it frequently causes symptoms in the genital area.

There are all sorts of dermatological conditions out there too.  

Hsv1 isn't likely to be reoccuring this often. Herpes in general isn't likely to be hanging around this long.  This is why I said even if you do have herpes - it's not likely the only thing going on.

grace

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Thanks Grace. I got a blood test for HSV a few days ago and I'm waiting on the results. I'll post them here when I get them.

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One more thing: I am considering Hidradenititis Suppurativa as a likely differential diagnosis, especially if I come back negative for HSV-2.
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Grace will be back tomorrow, so I will let her respond.  :)

I just didn't want you to think you are being ignored.

Aj
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101028_tn?1348750963
I think you've been spending too much time online trying to self diagnose perhaps?

Let me know if you need help with your blood test results. I'd return to the dermatologist for further follow up to try to get to the bottom of all this regardless of what your hsv2 results are.

grace
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Avatar_n_tn
PCR non-reactive for HSV-1 and HSV-2. My new diagnosis of the day is folliculitis.  

Yes, I have been trying to self diagnose, but that's only because none of the doctors seem to actually care about getting the right answer. Also, I should note that I was a US Navy Hospital Corpsman for six years, three of which were in a clinical setting, so I'm not a complete medical moron.

Thanks for all the help, everyone. I really appreciate it, but I think I'm just going to let this one ride. Final lesson learned: Don't take anything on faith. Get lab results.

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101028_tn?1348750963
they did a pcr blood test on you? if so that was a waste of time.

grace
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Why was it a waste of time?
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Even if it was a waste of time, I find it extremely unlikely that this was ever herpes. The lesion that made me go back to the hospital in the first place just recently cleared up after several months, and left a hypo-pigmented area that is flaking off what looks to be dry skin. Herpes doesn't do that. Or am I wrong about that, Grace?
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101028_tn?1348750963
Herpes is not a blood borne virus. It is not going to be detected in the blood thru pcr.  That's why a pcr blood test is a total waste of time outside of research or in newborns. If that was the way you were tested, you need a proper test done and whoever ordered you a pcr blood test for herpes needs more education on herpes testing so that they aren't repeating this error int he future.  

this sounds more than herpes even if you do have genital herpes which is what I've been saying all along.

grace
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Avatar_n_tn
Then what? Please throw out a few possibilities. Just give me some disease names to work with. Syphillis (syphilis)? HIV? Flesh-eating bacteria? What should I be getting tested for? My team of doctors (five so far) obviously need some help in what they should be looking for.
And as I understand it, blood PCR can detect herpes. Why would the hospital offer it if it is completely useless? I understand that it is not 100% accurate. But not useful at all? Is giving herpes to my girlfriend the only way I will ever get an accurate result?
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From WebMD--

"The PCR (polymerase chain reaction) test looks for pieces of the virus' DNA. It's an accurate test, but doctors have not decided how it should be used to diagnose genital herpes, so it's not the preferred method."

I must admit, I have no idea what this statement means.
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101028_tn?1348750963
That statement is in regards to using pcr for lesion cultures which is an accurate way to test for herpes when you have active lesions. In fact pcr swabs are so good at picking up on small amounts of herpes that it's the way they do the home swabbing tests for herpes to get the stats we talk about with shedding in between obvious lesions and such.  If you are actively shedding the virus on the skin's surface - pcr has a good chance of picking up on it even if you don't have an obvious lesion present. pcr actually detects herpes dna instead of say regular viral lesion cultures which rely on getting active virus on the swab and then getting it to the lab in a timely manner and being able to make the actual virus grow in the lab ( which is far easier said than done hence the high rate of false negative lesion cultures ).  

With newborns you can oftentime pick up herpes in blood by pcr because in newborns their immune system isn't working yet so the virus is able to cause a systemic viremia so you can oftentimes detect the actual virus in the blood. This is why hospitals do often offer herpes pcr blood tests. The doctor who chose to order a herpes pcr blood test on you did so in error. For adults - only a small percentage of folks even get a systemic viremia with their initial infection and even fewer still get a systemic viremia with recurrences which is why using it for routine herpes testing isn't worthwhile and should be avoided.  A negative pcr blood test for herpes doesn't tell you anything about your herpes status.  

Does that make sense?

grace
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Ok, that makes sense. And damn, that blood test was really expensive too. Looks like the hospital screwed me again.
Maybe if/when this rash comes back I'll go to another hospital and ask for a pcr swab.
Thanks again for taking the time to help me--
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101028_tn?1348750963
don't hesitate to complain to someone at the hospital about paying for tests that should've never been ordered in the first place. They should credit you the pcr blood test and give you the igg test free of charge.

grace
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Avatar_n_tn
I may do that, but it is not easy since this is not my home country. Foreigners don't really have the same rights as locals.
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Your advice was good, Grace. I got the IGG (not free of charge, though) and my titer was 150-something, which I'm told means that I got herpes sometimes within the last year. That makes sense, considering the "rash" first showed up in February.
I asked about diet, and the doctor told me that avoiding arganine rich foods to avoid flare-ups was just a myth. What do you think about that?
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101028_tn?1348750963
there is no such thing as herpes diet and avoid any websites that still try to tell you that there is.  That theory never held up outside of the test tube.  Why you have ob's has as much to do with genetics as anything else most likely from what we know at this point.  

Unfortunately I can't really help you much with the igg blood test you had done since it's not one of the common ones that are done worldwide ( can tell that by the way it was reported to you ).   I"m not familar with the accuracy of many of the tests done in other countries but I do know that many of them are highly inaccurate :(   I still recommend that if your rash reappears you go and get it cultured just to err on the side of caution to confirm your hsv status.  

grace
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I thought you recommended the IGG.

"They should credit you the igg test free of charge."

She said that someone without herpes should test anywhere from 1-10, and that I tested about 150-something (can't remember the exact number). She said that this number would be higher if I had had the infection for a few years already, and that my result indicates that I was probably infected within the last year, which sounds right considering the symptoms that I have.
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101028_tn?1348750963
There is more than one kind of igg blood test for herpes unfortunately. Yours appears to be the older titer test which has a history of inaccuracies.

grace
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Avatar_n_tn
Wouldn't it be more likely to get a false negative than a false positive?
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101028_tn?1348750963
you can get both. The older tests have a much lower sensitivity and specificity both.

( clear as mud eh? )

grace
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Avatar_n_tn
At what point in a lesions development, from redness, to vesicle, to purulent discharge, to scab, will a swab actually be most accurate?
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101028_tn?1348750963
within 24-48 hours of the appearance of symptoms. if you wait until it's scabby it's too late.  

grace
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