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  • HSV positive - but I think my doctors may be misinformed about the virus

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    Old 06-18-2018, 11:49 PM   #1
    bac93
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    HSV positive - but I think my doctors may be misinformed about the virus

    Hereís my herpes story - I am a 24 year old female and about a month ago, a few days before my 1st anniversary with my boyfriend (I havenít cheated on him, and he says he hasnít cheated on me and I believe him) I began to experience my first ob. After reading accounts on a lot of womenís first ob, I think I was very lucky to have not experienced it as intensely as others, however it was still most excruciating 2 weeks of my life.

    The day after my first lesion appeared (about a week after experiencing what I now know is the prodrome period) I went to urgent care and had the culture test taken. A week later I got the results that I had tested positive for hsv. I quickly attempted to make an appointment with my obgyn, because I had a lot of questions and while couldnít stop googling ďherpesĒ over the week I was waiting for my results and had pretty much learned all there is to know about the virus from the internet, I still wanted to follow up with my doctor to get the most accurate information I could. My obgyn didnít have any open appointments for weeks out, so I just made the first available appointment with any obgyn.

    When I got to the appointment, I quickly found out that I had made an appointment for a womanís issue (because from what Iíve read, women experience genital herpes symptoms much more intensely than men) with a 68 year old man (I googled him after, thatís why I know his age lol). The first thing I asked was if I had hsv 1 or hsv 2. They hadnít disclosed this information to me when I got the test results, and I had read on many message boards that knowing what type you have is important, especially in regards to preventing spreading it. He told me that it didnít matter, because the treatment was the same, and would not tell me what type I had. I next asked questions about spreading it to my boyfriend (he has not had the blood test yet, and has never had an ob) and he told me ďwell just donít have sex when youíre having an outbreakĒ and then he told me that you couldnít spread it if you werenít having an ob!

    He said there was less than .1% chance of spreading hsv without an outbreak. Now, Iím no saint, but my sexual history also isnít so vast, crazy, or blurry that I would not have noticed if one of my partners had herpes lesions on his penis. I asked ďso youíre saying that Iím the unlucky .1% that got it from someone who didnít show symptoms?Ē To which he replied, ďno, itís more likely that one of your partners was having an outbreak and just didnít tell you.Ē I basically blocked out everything he had to say after that.

    I made an appointment with my pcp for the next day for a second opinion, but after telling her what the other doctor had told me, she agreed with everything that he had to say. She also told me that there were no vitamins or supplements I could take in addition to the valtrex Iím taking for suppressive therapy to avoid outbreaks, and said there was really no foods, drinks (ie alcohol) or behaviors I should avoid. She just said that I should eat right, excercise and avoid stressful situations if I could - which I would want to do anyways. She also did not recommend that my boyfriend be tested for hsv, even though weíve been having unprotected sex for a year - including during the prodrome period before my first lesion appeared. Now, I understand that testing for hsv isnít very accurate unless itís a culture test through a lesion, but wouldnít it be best to be tested if you knew for sure that you had been exposed to the virus?

    All of this information is not sitting well with me. I have Kaiser as a healthcare provider, and my dad had told me when I was misdiagnosed for an unrelated health issue that Kaiser doctors often wonít contradict one another. Iím wondering, those of you who are more experienced or more well versed on the virus - does this information seem correct to you? Am I being misinformed by my doctors? And can any of you offer any advice on living with this virus? I have a vey physically demanding job and can not afford to be sick or in physical pain for such long periods of time again. Not to mention, Iím young and I enjoy sex. Of course I will always disclose to future partners if I donít end up marrying my boyfriend, and I want to be responsible in not passing the disease to any future partners, and especially my boyfriend as we still donít know if he has the virus or not. But, I also think I deserve to have a fulfilling sex life, and I would like to have kids one day, which means I canít always use condoms.



    Any and all information is greatly appreciated!! Thank you guys

     
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    Old 07-29-2018, 12:36 PM   #2
    SDSC
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    Re: HSV positive - but I think my doctors may be misinformed about the virus

    As a general rule, unless a doctor specializes in something they usually only have information to provide. Sometimes, that can be less accurate than patients that have an illness. When it comes to herpes, there is a lot of inaccurate information that floats around, often tainted by old stigmas, which is countered by more inaccurate information. At the same time, the hype that surrounds this illness and STIs in general makes it important to try focusing a patient's attention on real talk that gets straight to the bottom line.

    Part of the problem you are probably running into with your doctor is the definition of an "outbreak." To some, that means active and detectable blisters or sores. That seems logical, but it's subjective. Some suggest that it's possible to have small, emergent, difficult to detect blisters. Others suggest that it's basically impossible to not detect emergent blisters, and therefore someone is purposely being deceitful if they ignore these possible signs. Even doctors can have prejudices, and sometimes the arrogance that often goes hand-in-hand with being a doctor makes it more difficult than normal to penetrate those prejudices.

    If you have both been monogamous for a year, then one of you has been infected this whole time, yet this is the first indication. In every possible scenario there is little chance that a blood test yield a positive result, even if he's infected. There's a little bit of reading between the lines you need to do here. The blood test is generally considered to be unreliable overall. All insurance companies require medically justifiable explanations for all procedures they're billed to cover, but an unreliable test can never past muster. As a result you would have to pay out of pocket for the blood test, there's a 95% chance that it will turn out negative, but that negative result won't actually be telling you anything.

    HSV cannot be transmitted unless you are actively shedding the virus. When having an outbreak, you are actively shedding. Between outbreaks it is allegedly possible to also be shedding, but honestly this is guesswork. Go back again to the question of whether a person can have an outbreak involving difficult to notice blisters or other symptoms. But the most important thing for you to understand right now may be that there will not be answers that will allow you to control every detail the way you want. There are going to be uncertainties and you're going to have to accept that. It's going to be more important to figure out how your particular infection works, whether you end up having frequent outbreaks, whether you end up being able to predict a pending outbreak, etc.

     
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    Old 07-30-2018, 07:49 AM   #3
    yayagirl
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    Re: HSV positive - but I think my doctors may be misinformed about the virus

    Dear bac93,

    I will share right now that what I found helps a Herpes outbreak the most is to gently clean the area, pat it dry with clean tissue, then apply A & D Ointment. The A & D vitamins are healing to skin and the oil in it soothes and protects the skin. Take care of the lesions and they will heal right up with the least amount of suffering.

    Hsv is only detectable from an open Herpes lesion. The body tends to succumb to viruses when the immune system is low and/or we have been under a lot of stress.

    Hsv I is merely the location - oral, and Hsv II is genital. It is exactly the same virus just located in different areas. The main difference between males and females is that in general we may have more constant moisture 'down there'. Moisture is a breeding ground for the virus.

    To simplify, a virus is a virus. All this shame and hullabaloo over a very common virus!
    Yes, you can have children and continue your loving relationship with your partner. Just don't share the virus when you know you have an outbreak. We don't need to be kissing or having sex during that short span of time. Learn how to keep up a healthy immune system and how to handle stress the best you can and both of you will be just fine.

    Viruses can be dormant in the body for years, then from less than obvious reasons one can have an outbreak. In my experience the herpes sores seem to arise from extreme stress and can be avoided or minimized by learning how to handle and to self-calm, taking B complex vitamins to feed the nerves. We are always more susceptible to disease when we are under extreme stress. The best medicine for avoiding outbreaks is to manage stress and to remain calm.

    During an outbreak, it is known that the virus can be spread by body fluid to body fluid contact, so we do our best to isolate ourselves until the lesions are dried up. Herpes I and Herpes II only denote the location of the outbreaks. It is exactly the same virus. Of course a sore on the tender skin of the mouth or genitals may be extremely painful. It still is the same strain of virus.

    We can build up our immune system by healthy eating, getting enough rest, etc. However, we need to always be doing that because we can't always know when we might be exposed to an active virus.

    Generally we know to not have body fluid contact with someone that is experiencing a viral outbreak; herpes outbreak is similar to being exposed to someone that has a cold or flu. We know to not be kissing or making love at that time to avoid exposing the partner or others.

    Herpes is just one of those communicable viruses. Even babies and little kids can have herpes outbreaks. There truly is no shame in herpes other than what society has created. One can get cancer of the sex organs, too, but it is not classified as a venereal disease. In my opinion, Herpes should never have been classified as a 'venereal disease', with all the shame and suspicion that goes with it.
    __________________
    ~ YaYa ~

    Last edited by yayagirl; 07-30-2018 at 08:37 AM.

     
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