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Old 03-22-2005, 09:23 PM   #1
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Why do dr's know nothing about this?

Does anybody else feel my frustration? I have never had active blisters, and that is what they (docs) are all waiting to see! Instead I had flu-like symptoms (12 days after exposure), pain in both legs, severe headaches in the back of my head that caused me to be sick to my stomach, eye irritations?? extreme fatigue, small red bumps that they called ingrown hairs, and pain in my vagina! This all lasted for 3 weeks.

2 mos later almost to the day: pain in my vagina that wakes me up at night, severe headaches that make me sick to my stomach, now pain in one foot, general depressed and tired feeling, more red pimples on my lower stomach and upper thighs that itch like heck!

They want to diagnose me with viruses like a cold (I hope so!), follicitis???, vulvodynia, etc. All now a part of my life coincidentally after my exposure to herpes?

While I hope they are correct, and while I await my 16 week blood test, is there a doctor out there that knows ANYTHING about herpes?? I have to tell them everything from what I learn online. My gyno didn't even know when the appropriate time for testing was!!

Additionally, has anybody ever tested negative (cultures and blood tests) up until week 13 and still tested positive (blood) later?

I'm sooooooo confused!!

 
Old 03-22-2005, 10:29 PM   #2
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Re: Why do dr's know nothing about this?

I can definitely relate to your anger!!!!

when my teen daughter tested pos for gh, i knew she had gotten it from her current boyfriend because she has not been intimate with anyone else. he claimed that there was no way it was from him and brought me a recent lab result test dated about 1 mth prior to their dating. (claims his mother found out that he had sex with his previous girlfriend and made him get checked out). it read "pos for hsv1, neg for hsv2".
and then at the bottom of the page, hand written was "no stds, patient notified" so, they miss informed him and it makes me very angry... i am sure that if i brought my daughter to have a blood test today, it would also read "pos for hsv1, neg for hsv2" and hers is a std.

the health care dept as well as us, need to start educating people accurately. I believe that if his doc would have educated him that his pos test for hsv1 was neg for stds for him but could be given to someone else genitally (therefore indeed a std), then things might have been different.

your test way pos for hsv1.. it could be genital. i would go back to your first doc and have a swab done of the sores. that is one way to tuly know. good luck.

 
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Old 03-22-2005, 11:39 PM   #3
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Re: Why do dr's know nothing about this?

Yes doctors are extremely uneducated on this matter. For one thing, in med school you are basically forced to memorize the shortest "classic" symptoms for basically every disease. They don't get into any real details about different presentations or variations from the "classic" (even if the classic presentation is not the norm). So basically all that they are taught is how it should "typically" look and the drugs used to treat it. They don't go into any details about the associated symptoms of a primary outbreak or anything like that. And to boot, the medical school cirriculum does not stress herpes at all...so trust me, you, and just about every Herpes patient who has done some research on the net are better educated than a general family practitioner. you would hope that a compassionate doctor would take time to learn more about the disease when confronted by patients who have it, but that doesn't always happen. now hopefully an infectious disease guy would have some better training on the matter, but still...

This doesn't just apply to herpes, it applies to almost every disease/condition/symptom. Think about it...a patient goes to great lengths to learn as much as he/she possibly can about what's wrong with them. For a doctor, he/she has just been conditioned to memorize as many different conditions as possible--so while he/she knows of diseases that the patient probably has never heard of, the doctor's depth of knowledge about each single one is not going to be nearly as all-encompassing as a patient's.

 
Old 03-23-2005, 05:35 AM   #4
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Re: Why do dr's know nothing about this?

I totally hear you! My first ob started 3 weeks ago. The first doctor, a gyn, just told me I should calm down and that it probably wasnīt herpes, although I already had an active blister in my genitals. In the next 24 hours it got so bad that I had to go to the emergency room and there, a young doctor just told me that yes, itīs herpes, hereīs a cream and have a good day. Nothing else!

realized quickly the cream alone wouldnīt help so I went back to the first gyn and demanded some pills. She put me on Acyclovir, which helped. I also demanded a blood test to find out which herpes type it was. She wondered why, whatīs the difference, you have genital herpes and thatīs that. Duh, thereīs a world of a difference!!! Not just because it might tell me what to expect in the future with my obīs but also so that I can figure out my sexlife with a future partner. Perhaps he will also have hsv-1 or hsv-2 and we can accordingly decide how to proceed with contraceptives etc..

think everone who has herpes should know their type at least for this reason. I still donīt know my type, since the blood tests came back negative for both hsv-1 and hsv-2. The test was done 1-6 weeks after exposure, that is, I had had several partners in the last 6 weeks, so no telling who gave this to me.

Iīve been sick with all kinds of stuff for the past few months. I donīt know anymore what is what. Iīm not sure if the symptoms Iīm having now are due to a primary herpes ob or not. Itīs a systemic infection/virus, so in the primary stage it can come with a bunch of different symptoms, not just the blisters in the genital area.

To complicate matters Iīm not living at home and running to a bunch of doctors - which Iīve done - is costing me a fortune. And it seems every time Iīm educating the doctors, Iīm telling them about tests etc..Iīm seeing a specialist in infectious diseases this week, letīs see what she has to say. My biggest fear right now is for something much more serious than herpes...

I whish there was a doctor who could check me for everything and take the time to listen to every little detail I have to say. But there is no such thing, very few doctors are totally specialized in one disease and many diseases come with the completely same symptoms.

My advice to you: if you have strong or even mild reasons to suspect herpes, make your doctor put you on meds. As far as I know it canīt hurt. And then get a blood test when enough time has passed from your possible exposure.

And know this: herpes is so NOT the end of the world!!!

Good luck !

 
Old 03-23-2005, 05:38 AM   #5
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Angry Re: Why do dr's know nothing about this?

I feel the same way. They told me I have type 1 and it is on my face and this is my fourth breakout in the last 30 days. In my day I go thru trying to be posative, to thinking about suicide to being mad and hating myself and not wanting to date anyone every again. I don't know what to do and I have tried everything.

 
Old 03-23-2005, 05:55 AM   #6
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Re: Why do dr's know nothing about this?

yes, it is very frustrating to deal with doctors sometimes! if you really want a physician who is knowledgable in HSV, find a good Infectious Disease doctor. As a specialist, they spend additional time studying the specifics of infectious diseases, herpes (all of them), RSV, HIV, TB...all that stuff. They will also be the physicians most likely to accurately interpret blood results and be up to date and well read in the latest reccomendations and treatment options.
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Old 03-23-2005, 10:03 AM   #7
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Re: Why do dr's know nothing about this?

You're right HSVmom, the only problem is that firstly, there aren't as many infectious disease doctors around, and secondly, it can be very hard to schedule an appointment with them. I tried calling around when I had my primary and no infectious disease doctor in my area had an opening for like at least a month, which I wasn't going to wait for=(

 
Old 03-23-2005, 08:33 PM   #8
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Re: Why do dr's know nothing about this?

I'm going to post this, but don't respond to me, because I'm not coming back to this board. You remind me of myself from Aug 03 until Dec 03 (16 weeks) when I was going through my hysteria. Stop reading and researching this condition on the internet. Stop coming in here reading posts. Most people will test positively in six weeks. If you are like me, you will have to have that final confirmation test. Mine was negative. The only thing that was positive was my high anxiety level. Take care.

 
Old 03-24-2005, 08:36 AM   #9
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Re: Why do dr's know nothing about this?

hhhmmm...well, i think the anxiety is there if you think you have herpes regardless of what is on the net.

swept under...i guess i am just blessed to have access to our docs due to my sons' illness, but you do have a very good point. actually, one of their ID docs is the leader in neonatal hsv even, and we've seen the ID docs so many times that i guess i take that for granted! it isn't very practical in most situations. BUT if someone has easy access, i would encourage you to consult with them.

maybe you could suggest your doc consult w/an ID specialist?!
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Old 03-24-2005, 12:46 PM   #10
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Re: Why do dr's know nothing about this?

My doctor didn't know anything at all when I went in during my first outbreak...he told me that I was only one of the few patients he had ever seen with genital herpes (and I live in a big city and he's very busy). So it makes me wonder, I guess that genital herpes is not all that common...cause if it was, more doctors would know more about it.

Last edited by new_to_this; 03-24-2005 at 12:46 PM.

 
Old 03-24-2005, 05:03 PM   #11
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Re: Why do dr's know nothing about this?

Genital herpes IS all that common. The estimates are between 20-25% of the population. And while at this point there's a lot that the medical community as a whole doesn't know about herpes, there is no excuse for an ob/gyn or general physician not knowing the current info and recommendations for genital herpes.
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