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101028 tn?1419603004

ali-jay and others

Since the original thread is now on page 2 I thought I"d make a new one to continue it.  http://www.medhelp.org/forums/STD-Support/messages/1068.html  is the original thread.

when I say knowing your type is important - I am SPECIFICALLY REFERRING TO GENITAL HERPES in those threads - not to herpes testing in general.  I don't feel there's a need to say that both site and type are important in posts like that.    The reasons why I say it I discussed in my other thread about this.  If you have hsv1 genitally but are only told you have "genital herpes" and meet someone later on with "genital herpes" and they have hsv2 - you should still be taking precautions to reduce your chances of contracting it - especially if you are a female of child bearing age.  If you just assume you both have genital herpes so it doesn't matter you could contract hsv2 which would result in potentially more ob's, more shedding for future hsv2 neg partners and be more of an issue when pregnant. so yes indeed knowing the type of herpes you have genitally is important. Also why pay more of your hard earned money on antivirals then you need to?  The benefits of suppressive therapy are far greater for hsv2 then for hsv1 genitally. Also we don't have info on if daily suppressive therapy is effective for hsv1 - either orally or genitally - we also don't have info for if it reduces transmission to a partner so you also have to take that into consideration also. Also since more folks who have hsv1 genitally also have it orally - it's one more thing to think about with future partners.  my point is always that you can't make educated decisions about precautions until you know who has what - even if you aren't entirely sure about who has what where.  

As for the article on valtrex and mandatory herpes testing during pregnancy - the article posted I don't feel does a good enough job of explaining the entire story behind this all. The "other side" of that whole argument has written many articles filled with inaccurate information (  classic scare tactics - take a potential side effect that less than 1% of folks who take high dose valtrex ever experience and who's side effect hasn't even been directly linked to valtrex and make it seem like it happens all the time to lots of folks amongst other things ) . If you search online you'll find more of the whole discussion and some  of the rest of the background behind all this uproar ( as well as discussions of when pharmacutical companies helped shape policy in the past that went very wrong hence the mistrust of gsk funded speakers being the ones pushing for testing during pregnancy even though they are also doing the majority of the pregnancy and herpes research out there ).  You can argue that gsk is only looking to sell more valtrex but what about the other side - the insurance companies that don't want to pay for more valtrex and for blood testing so they try to discredit the folks pushing for mandatory hsv testing during pregnancy so that they can save money (  at the very, very least - at least OFFER it to pregnant women and let them make the decision whether to get tested or not and whether it's worth taking medication or not ).  The consumer unfortunately gets stuck in the middle of it all as usual :(   Just knowing that you are infected would decrease the risk of transmitting it to your child during delivery as well as if more folks knew they had hsv1 then perhaps it would decrease the number of cases of hsv meningitis/encephalitis acquired during infancy and childhood ( unrelated to neonatal herpes infections which are acquired in utero or during birth - post birth acquired hsv infections have a much higher rate of infection than neonatal hsv cases ).   Like I said at the very least herpes testing should be offered to pregnant women and their spouses - right now it's not even talked about and in fact many clinics don't even offer blood testing if a couple if interested in it. In 20 years of being a pediatric nurse - I've never once taken care of an infant/child with a herpes infection of any kind who's parents knew they had either oral or genital hsv.  Even the ones who got obvious cold sores - never had any idea that you could infect your child. Definitely a HUGE lack in teaching by the medical community in general that needs to change.

As for the discrepancy between the numbers I quote and the numbers in the hsv1 vs hsv2 article - not trying to put down gayla at all but the original article that most of the info from that particular article comes from is many years old now - she's made some changes over the years of course.  she hasn't updated it with the newer info out there for hsv2 that has become the generally accepted shedding rates and those rates come from an older study that she lists  ( and the research article that the 15% rate of shedding number comes from actually detected a 40% average rate of shedding with hsv2 during the first year via pcr - the 15% number comes from regular viral cultures only - just something to think about when doubting the rate of shedding of the virus - oh and no I don't want to argue about pcr over detecting in this thread - we've already covered that before )  

as for the comments about france and germany - they have more hsv1 infection both orally and genitally than they do hsv2. Hsv2 and pregnancy is even less of a big deal for them than it is here in the US. Their issues with herpes is more of the post pregnancy sort than during pregnancy. Less developed countries that do have as high as or higher rates of hsv2 infection as the US does - don't have the money unfortunately to get the word out and to offer testing and treatment so they concentrate on hiv and other diseases instead.

We can argue until we are blue in the face about all this I'm sure.   I just wanted the chance to further explain why I write what I do.

grace
11 Responses
101028 tn?1419603004
also even though I've said it before I'll say it again - no I do not work for gsk or novartis. I do not receive any compensation from any pharmacutical company.    Just wanted to make sure that was clear.

grace
Avatar universal
Hi there Grace,

First, I have read your posts to people and you are really thoughtful and helpful :o).  I think you give information that people aren't getting from their own doctors.  Plus, you have answered some of my questions regarding HPV and for that I am really grateful.

I was not in on the original posts but I do have some questions regarding herpes.  First, I get cold sores on my mouth and have since I was a child.  I have never had cold sores on my privates but I guess this doesn't mean I haven't been exposed???

Ok, what is the issue with pregnancy and herpes? How will knowing you have herpes help if you are pregnant?  Do people pass on herpes to their kids? Is that a bad thing? Would they do a c-section otherwise?  I know lots of people who have herpes and have regular vaginal births w/o an issue. If fact, they never even talked about their herpes while they were pregnant just about being a new mom!!!

Is there a big difference between herpes 1 and herpes 2?  I've never taken meds for my cold sores but it looks like with herpes 2 you are supposed to?  

As for herpes, the people that I know who have it, don't take any meds.  One person got an infection and never got it again.  Another lady gets cold sores on her privates every 4 years.  By the way, that one never tells partners she has herpes b/c she thinks as long as she doesn't have an outbreak she's can't pass it on.

Ok, here's where I have to vent - I have high risk HPV which caused LGSIL.  The doctor is just watching it for now.  She did a colposcopy but found nothing to biopsy.  At first I was scared out of my mind.  Then, I come to find that hpv is so common, most people have with low risk HPV (which causes warts) or high risk HPV which can lead to cancer. It's as common as a cold. And here's the kicker - most people with HPV will never develop anything.  When I see others posts about HPV, they talk about the vaccine and that HPV causes cervical cancer.  That is true - HPV is the cause of cervical cancer however the percentage of people with HPV who get cervical cancer is less than 5%!!!

I hope this wasn't too long but I had lots to say.  I think you are great Grace and thanks for helping us make sense of all this mess.



Avatar universal
I have two further points:

How many actual known cases are there of someone with genital HSV1 becoming subsequently infected with genital HSV2 ? I've never seen any posts written by people suffering genitally from both strains, nor any posts written by a gHSV1 sufferer scared out of their wits over becoming infected with HSV2. For a HSV2 sufferer, wouldn't it be rather comical ( not the right word... ) if a potential partner turned out to have gHSV1 and then decided no to take the relatationship any further ?

Although herpes has been around as long as life on earth has existed, noone knows how long each type has been in existance. Statistics and percentages are contradictory, conerning both population levels of infection as well as shedding. A study carried out in Switzerland in 1992-93, a small European country which has a population of 8 million and borders both France and Germany, shows that in three different regions, the level of HSV2 infection amongst women was almost as high as in the USA. If we consider the increase of awareness in the States thanks to sites such as this and the devoted people who spend time answering people's questions, and then look at the lack of similar services on the European continent, how can the rate of infection in Europe not have increased dramatically over the past 15 years?

AJ
Avatar universal
Ali-jay,

What is the difference between the two herpes?  When there is a break out, can you tell that you have hsv1 over hsv2?  I am not understanding all this.

Thanks, mayflowers
Avatar universal


Grace if you're that confident in your data regarding shedding
in sub-clinical populations why don't you advocate a clinical
trial???  

As for concern about herpes being transmitted to newborns by infected
mother's that old stuff.  When the herpes scare first came out (years ago)
a major research hospital in my area went down that path. (c-sects).

The didn't inprove the outcome and abandoned the practice.

Further many moms can't aford this treatment.  Also in border
states many moms are from countries with very high infection
rates. Do you really want Doctors performing c-sects in those numbers.

Also the truth is babies from infected mom's have the anti-body
to HSV-2 anyway during the first weeks of life.  The risk is very low.

Ali-Jay --another link you may want to look at is http://www.medscape.com/viewprogram/5695_authors

You may have to register with medscape, but it's free. I wish in the popular
press (websites and popular press) these disclosures were reguired by law.

Avatar universal
There's plenty of online data concerning the "differences" between HSV1 and HSV2.

As for outbreaks, in my own experience, there is no difference. An oral oubreak looks and feels very similar to a genital one, although, of course, an oral outbreak can be seen by others whereas the genital kind remain intimate ; )

I think the big difference is the one so apparent on message boards like this one, - i.e. the way people perceive the virus, - cold sores are acceptable, whereas genital herpes, in spite of how sex is portrayed in the media, is not.

The general concensus is that if you have oral herpes, it's likely to be caused by HSV1. Having genital herpes is more complicated as both strains are quite common.

AJ

Avatar universal
I was wondering what the difference was and all I see on this forum seems to be related to testing for the 2 types.  That's interesting that they look and feel the same. Thanks for answering me back.

Avatar universal
Thanks for another telling link. With regards to the publication of such disclaimers, I couldn't agree more.

Without wanting to sound bitter, I am pretty sure that information concerning shedding, risk of infection etc. - which is so easily available on certain "reputable" sites, including ones belonging to the big pharmaceutical companies, - was the deciding factor with regards to my ex HSV2 negative partner's reaction : " You've knowingly tried to infect me with an uncureable STD ! This is the worst thing one human being could do to another and is an immoral and probably criminal act ". Fifteen years ago, he would have had nothing else to go on besides his doctor's word ( " Avoid sex during outbreaks " ).

If he'd been a French or German speaker, such ammunition would have been very difficult to find.

Sacr
Avatar universal
Ali-jay, you are making some great points. As I said, I'm still not convinced that "shedding" is the culprit in most transmission cases. I'd have to see some data on that, which of course we don't have. It would also be interesting to take a look at the research historically that went into the identification of "shedding," including who funded such research and how it was determined that shedding was indeed "high risk" for infection. Especially with the latter, I wonder if the experts are even on solid ground here.

Color me skeptical.

I also think you are onto something in changing the language. Maybe it's time to ditch the "type 1" and "type 2" stuff. A cold sore is a cold sore, some have it below the waist, some above, and some have both. From this forum alone, you can see the resultant confusion and hysterics that result from the misunderstanding about the two so-called "types."  And, yes, I agree that this differentiation, if you could even call it that, because it really is the same virus, continues to reinforce the stigma, especially about the genital variety.

The argument about treatment and rate of outbreaks between 1 and 2 genitally falls flat to me. There are people for whom medication doesn't work in type 2. There are probably folks for whom medication works great in type 1. If you have few outbreaks, whether it's 1 or 2, that's good news.
Avatar universal
Thanks, bb, your comments are appreciated !

Today, I've been thinking about oral herpes and the persistant claims of medical personel that it "must be HSV1".

Contrary to the total lack of posts written by people who suffer genitally from both strains, there are plenty of posts written by people who have been surprised by an HSV2 postitive blood test result, and who have either only had oral outbreaks, or have never had any kind of outbreak anywhere...

If HSV1 is just as easily transmitted to the genitals from oral sex, and if gHSV1 is no guarantee that the patient will not contract gHSV2, is there any reason why the reverse shouldn't happen ? ( - oral HSV2 transmission from oral sex, or oral HSV2 transmission following a prior oral HSV1 infection ) . Although the virus is reported to "lose its punch" when it happens to occur outside of its site of preference, there are exceptions...

If someone with oral HSV1 is subsequently infected with oral HSV2, how would the person know ? Surely, he or she would just go to the pharamcy and buy a tube of acyclovir cream or whatever, and then get on with life... Would someone with a long history of oral outbreaks rush down to the clinic to be tested after having kissed someone who may have oral HSV2 ?

Finally, with regards to stigma as well as the use of language, - how will it ever be possible to combat this when we are so intolerant with eachother? - Grace, I may be wrong, but the last time I looked at Gayla's page it had been updated, - not with regards to shedding, - but there definitely was an update. Shouldn't people like you and Gayla be working together, as opposed to citing personal opinions ?
Avatar universal


I'm writing my congressmen because it seems to me that as patients we are bombarded with commercials advocating drugs or courses of treatment and are entitled to conflict of interest disclosures from any person who appears on popular websites  or various magazines giving medical advice.

For me there are four issues.

1.  Complete disclosure regarding the accuracy and limitations of serological
HSV tests.  I fear there are many people walking around  misdiagnosed with genital herpes.  In my opinion any positive result should be backed up with a confirming test and IGM "recent exposure" tests should not be used.  I think Doctors would recoil in horror at the idea of diagnosing a person with HIV based solely on a single serological test.  They would want a backup test such as as WB and my understanding is that the positive predictive value of HIV tests is much better than HSV tests.

It's my hope that some of these people with come forward, file some lawsuits,
and get this straightened out.


2.  Disclosure of conflict on interest as mentioned above.  (ali--jay--I think there's a herpes blog on WebMD. You may want to look at it)

3.. I'm not sure if Valtrex is actually labeled for prevention of herpes transmission in sub-clinical populations but it is directly or indirectly being
prescribed for such.  I think before we get too far down that path
there needs to be a clinical trial comparable to the one performed in the
population with clinical symptoms by the NIH or other independent body.


4.  I don't see the benefit of college professors being involved with big pharma.
Don't they have enough to do educating students.  Maybe I'm dense, but I
don't see what a college can add to the research that can't be done by the
Drug Company and to the extent colleges need to get involved in research it should be funded by the CDC or NIH.  Certainly in public colleges we don't
want our tax dollars directly or indirectly supporting either the marketing or development of big pharma drugs. Also, in my opinion, any patents or derivative patents developed by public colleges should be in the public domain.  




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