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Dan - 08 Jul 2003 19:23 GMT

hi,

i have a few questions about the herpes diagnosis i've been given and
i wondered if anyone has had a similar experience.

i started getting lesions about a month ago and went to the doctor
about 3 days later. 3 doctors looked at my lesions and told me with
almost absolute certainty that they were herpes. they decided to do a
blood test to be sure, but gave me a valtrex perscription and told me
to start taking it and wait for my results. i started taking the
valtrex, and my symptoms started to diminish after a few days, but
didn't go away completely for another week. i called in to get the
results of my blood test, and, to my surprise, they came back negative
for type I and type II herpes. my doctor told me to come back if i
had any more lesions. about a week later, i got more lesions and made
an appointment to see the doc. he referred me to a dermatologist, and
now said that he didn't think it was herpes.

i went to the dermatologist, and the first thing he says when he looks
at the lesions is herpes. he says that the blood test isn't really
accurate for ruling herpes out and says he wants to do a culture,
which will be ready in two days. that was today.

my questions are as follows:

1. can i assume from the blood test that if i have been infected, it
is within the last 3 to 4 months, which is the amount of time
antibodies take to show up? i only ask because if so, that means i
got it from my current girlfriend, who i've been having sex with for a
litle over 3 months now.
2. can herpes outbreaks last up to a month? this outbreak has lasted
a total of about a month.
3. are the lesions always painful? my lesions are not painful at
all, and don't really itch.
4. will any other type of illness respond to valtrex? i know
shingles, and other illnesses also respond to valtrex, but those are
supposedly very painful and i have no pain.

i've been reading this group for the past couple of days trying to get
an idea of where i stand, and i had read a lot of stuff that made me
believe that the blood test was pretty accurate. am i dealing with an
incompetant set of doctors, or what?

this last month has been an emotional roller coaster for me. i've
been told that i had herpes, then that i didn't, then that the test
that proved that i didn't wasn't valid. i'm really confused and just
want some answers. any help is greatly appreciated.

thanks,
dan

Reply to this Message

Angela - 08 Jul 2003 21:27 GMT

My thoughts and experiences below ... keep reading.

> 1. can i assume from the blood test that if i have been infected, it
> is within the last 3 to 4 months, which is the amount of time
> antibodies take to show up? i only ask because if so, that means i
> got it from my current girlfriend, who i've been having sex with for a
> litle over 3 months now.

The thing is ... you can't automatically assume that because you could have
had herpes in your system all this time and didn't know it ... there are a
lot of folks out there that have herpes and don't know it because they don't
get any signs or symptoms. There are also folks out there that don't
realize that cold sores is indeed oral herpes. So, they continue to pass
herpes through oral sex.

> 2. can herpes outbreaks last up to a month? this outbreak has lasted
> a total of about a month.

When you first get herpes (if this is indeed your first time contracting it
...) things can take some time to heal. Your body needs time to make
antibodies. I would definately stay in touch with your doctor and keep
taking the meds.

> 3. are the lesions always painful? my lesions are not painful at
> all, and don't really itch.

Not everybody shares the same symptoms. I have had genital herpes for eight
years now. I do not get flare ups any more but in the beginning I got them
all the time and I will admit ... they were not very comfortable. But, the
intensity does decrease over time.

> 4. will any other type of illness respond to valtrex? i know
> shingles, and other illnesses also respond to valtrex, but those are
> supposedly very painful and i have no pain.

Well ... there are about eight types of herpes viruses ... you can read
about all that here:
http://www.westoverheights.com/freebooktext.html#viruses . You can also do
some research by checking out all the links listed here:
http://members.cox.net/yoshi2me/Links/Links.htm .

> i've been reading this group for the past couple of days trying to get
> an idea of where i stand, and i had read a lot of stuff that made me
> believe that the blood test was pretty accurate. am i dealing with an
> incompetant set of doctors, or what?

No, I think you are having difficulties getting your hands on the right type
of test. Check out that link that I gave you earlier ... there is a section
called 'testing'. That should help you sort things out. It sounds to me
like the Herpes Specific Western Blot is in order. That is a blood test
that will tell you if you have type-1, type-2, both or neither types in your
system. It's considered the Gold Standard in herpes testing. You can't go
wrong with that test. Talk to you doctor about it and if you have to print
out the testing sections that you wind up reading.

> this last month has been an emotional roller coaster for me. i've
> been told that i had herpes, then that i didn't, then that the test
> that proved that i didn't wasn't valid. i'm really confused and just
> want some answers. any help is greatly appreciated.

It's possible that the test you had done generated a false negative.
Hopefully you can get to the bottom of it sooner rather than later.
Perhaps your partner would be willing to get tested as well.

Hang In There,

~Angela

Come Join Us Over on Picking Up the Pieces:
http://groups.yahoo.com/group/PickingUpThePieces/

Reply to this Message

mishaisacat - 09 Jul 2003 00:42 GMT

My comments below, but first I guess I should say hello. Hello!
----- Original Message -----
From: "Dan" <dan_talk_thai@yahoo.com>
Newsgroups: alt.support.herpes
Sent: Tuesday, July 08, 2003 2:23 PM
Subject: questions

> hi,
>
[quoted text clipped - 6 lines]
> blood test to be sure, but gave me a valtrex perscription and told me
> to start taking it and wait for my results.

It's unfortunate they didn't culture you then because it takes about twelve
weeks to get antibodies for the blood tests to work. They should have done
both, if you ask me.

i started taking the

> valtrex, and my symptoms started to diminish after a few days, but
> didn't go away completely for another week.

sounds like it responded to the antivirals

i called in to get the

> results of my blood test, and, to my surprise, they came back negative
> for type I and type II herpes. my doctor told me to come back if i
[quoted text clipped - 6 lines]
> accurate for ruling herpes out and says he wants to do a culture,
> which will be ready in two days. that was today.

smart doc.

> my questions are as follows:
>
[quoted text clipped - 3 lines]
> got it from my current girlfriend, who i've been having sex with for a
> litle over 3 months now.

yep. And even if the culture is negative, you might want to consider
another blood test in three to four months. Cultures only tell you what
gets on the swab, and sometimes, even if you have the virus, none actually
gets on the swab.

> 2. can herpes outbreaks last up to a month? this outbreak has lasted
> a total of about a month.

yes. outbreaks can also be non-existant. i think the lasting-a-month
outbreak would be consistent with a new infection. Does that make sense
folks?

> 3. are the lesions always painful? my lesions are not painful at
> all, and don't really itch.

I think it all depends. During my only real outbreak in ten years, I was
pretty sure that life as I knew it was over. It was painful to walk, sit,
stand, pee, sleep, stay awake, breathe, bathe, shower, wipe, etc. But never
since have I had actual blisters and ulcer type deals. Occaisionally a
faint tingling, itching, or nerve pain, but that's it. Very faint.
Everyone's body deals with it a little differently.

> 4. will any other type of illness respond to valtrex? i know
> shingles, and other illnesses also respond to valtrex, but those are
> supposedly very painful and i have no pain.

Maybe chicken pox, but that's the same virus as shingles. Cold sores, but
those and genital herpes are both herpes symplex viruses (the two viruses
can inhabit the both of the areas). I dunno.

The blood tests usually are pretty accurate. But they may not be helpful if
your body hasn't had time to produce antibodies, which is what is tested for
(not actually the virus itself). I can't believe that the doctors were
either unaware that the tests test for antibodies or that it takes that long
for antibodies to form, but it has happened before.

Well, if you've got it, you know 1) you haven't had it long, and what you've
already gone through is probably the worst of it physically, and 2) Valtrex
works for you--as might the cheaper acyclovir--so you know you can get
medical relief if you need it. Like I said, I thought I was going to die
when I had my first (and pretty much only full) outbreak. For the most part
my body deals with it pretty well. For *most* people, this disease isn't
too bad at all *physically*. As you may know, only about twenty percent of
the people who have it have experienced enough symptoms to notice.
Emotionally is another story. My experience isn't that OTHER people
stigmatize you, but that you stigmatize yourself. And it's never a fun
conversation to have with a new lover, but honesty always helps. Anyone who
truly gives a sh.t about you now will still give a sh.t about you. They
might wish you didn't have it, but they won't hate you for it. They might
want to educate themselves about it in order to protect themselves (and they
also might like to pretend it isn't there so they don't have to worry about
it), but rarely will they stigmatize you as you might stigmatize yourself.

I promise you it will get better and it will be okay, no matter the outcome.

> thanks,
> dan

cheers, good luck, and keep us posted,
mishaisacat

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M2slo2cht@Yahoo.com - 09 Jul 2003 15:16 GMT

>i went to the dermatologist, and the first thing he says when he looks
>at the lesions is herpes. he says that the blood test isn't really
>accurate for ruling herpes out

He's right for a new infection. Could be wrong for an infection older
than 3-4 months, depending on which blood test he's talking about.

>and says he wants to do a culture,

That'd be best for now. Just be aware, cultures are notorious for
false negatives. Misha mentioned one reason why.

>1. can i assume from the blood test that if i have been infected, it
>is within the last 3 to 4 months

I wouldn't assume anything for sure yet.
First, find out what kind of blood test they used. There are several
on the market, some more accurate than others. But you're on the right
track. If a second blood test a couple of months from now is positive,
chances are this is a new infection.

>2. can herpes outbreaks last up to a month? this outbreak has lasted
>a total of about a month.

A month is a long one. But Mishaisacat's right. It's possible,
especially for a primary outbreak.

>3. are the lesions always painful? my lesions are not painful at
>all, and don't really itch.

Nope. Not necessarily painful. Or itchy.

>4. will any other type of illness respond to valtrex? i know
>shingles, and other illnesses also respond to valtrex

Shingles is caused by a herpes family member. As far as I know,
nothing outside the Herp family responds to Valtrex.

> i had read a lot of stuff that made me
>believe that the blood test was pretty accurate.

Depends on the test. Yoshi already mentioned the Western Blot as the
gold standard. There's also the HerpeSelect tests. The POCKit might be
a good choice but it's unavailable for now. Might be available by the
time you're ready for it though. Here's a link with some info re
tests:

http://www.ashastd.org/pdfs/blood_test.pdf

>am i dealing with an
>incompetant set of doctors, or what?

Who knows?<shrug> There are quite a few docs that aren't up to speed
on herpes. Or maybe they just weren't aware that a blood test won't
detect a recent infection (didn't read the directions?? ... I dunno)
Or maybe they ARE aware and knew they could nail down a new infection
by using two blood tests a few months apart. Whatever the case, sounds
like you're willing to do the research on it, so maybe you can teach
'em something ;-)

> i'm really confused and just
>want some answers.

Herp can throw curves to even the experts. Seems it affects everybody
differently, so it'll take awhile to see how your body will handle it
and what your triggers are and what you're feeling during prodrome,
etc. All that will come with time. So hang in there, it's not so bad
once you learn more about it and how to handle it.
oh! and be sure to check out the Westover Heights site that Yoshi gave
you. It's a good one. Here it is again:

http://www.westoverheights.com/freebooktext.html

Let us know how your culture come out.

M2

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