I am still me

My name is Liz and I have genital herpes.  Four months ago, I would’ve never thought those words would escape my lips.  Even almost half a year after my diagnoses, I’m dealing with the pain, heartache, and anguish my condition has put on me and my family.

I was a happy 19 year-old basking in the excitement of almost finishing my freshman year of college.  I loved to go out on the weekends, drinking, smoking, dancing and flirting.  Just like my friends, I’d hooked up with a few guys, but I used protection usually every time.  The possibility of getting pregnant was the only thing in the back of my mind, let alone contracting an STD.

At the end of April, my school had a week-long break.  I expected it to be a relaxing time at home, so I asked a friend of mine, *Kate,  to spend the week with me.  On a Thursday night, we decided to spend the evening at my best friend, *Lisa, from high school’s college.  Long story short, we went to the bars downtown and I drank myself into oblivion while flirting with a guy I’d met a few times before, *Shaun.

I woke up the next morning completely confused.  I was laying in the top bunk in Lisa’s room, no pants on, next to Shaun. In my drunken stupor, I had supposedly broken my phone in half and then lost it. Kate had gone home with Shaun’s friend and didn’t return for an hour.  I didn’t even know until the next day that Shaun and I had sex.  Normally, I would’ve physically been able to tell but I was too hung over to notice, plus I had been on my period and couldn’t believe I would do that with a guy I barely knew.

Lisa’s parents arrived to help her move her stuff back home early that morning as I spent the next eight hours vomiting.  Surprisingly, not repulsed by my hangover, Shaun wanted to see me the next two nights.  I was a bit weirded out by the fact that I didn’t even remember kissing him, let alone having sex with him.  And I was very upset when Kate told me Shaun’s friend said Shaun didn’t use protection.

Nevertheless, I kept talking to Shaun as Kate and I moved back up to school that Sunday, phone-less and relying on e-mails to keep in touch with Shaun.  On Monday, I woke up with a funky, thick and smelly discharge.  Thinking it was one of my recurrent yeast infections, I called my mom (from Kate’s phone) and asked her what I should do.  She told me to go get Monistat and use that.  I shook it off as not a big deal and didn’t go get the over-the-counter medicine.

On Tuesday, the discharge was so prominent and the burning and itching was so painful, I decided to look through my medicine box, where I found a Monistat box I hadn’t used the fall before. Although it was expired, I used it anyway which only irritated my situation.

By Wednesday, I could barely walk and finally scheduled an appointment with the campus clinic for Thursday.  As my girlfriend went out that night to the bars, Kate and I stayed in.  I went to the restroom, to use some Vagisil anti-itch medicated wipes and to my horror, noticed at least a dozen tiny bumps.  I burst into our room and locked the door.  I immediately looked up pictures of STDs and in my desperation, I asked Kate to look at my bumps and look at the pictures.  We both confirmed they looked eerily similar.

She immediately called Shaun’s friend *Alex, who was at a party with Shaun.  She asked him if he was sure Shaun didn’t used protection.  He answered yes, and asked why.  “Shaun doesn’t have anything does he?” she asked.

“Are you kidding me?” he replied.  “No, he doesn’t have anything.  Why would you be worried about that?”

“We were just wondering,” Kate covered up. “I mean, she isn’t on birth control.  She could be pregnant.”

“Well, Shaun said she had her period, so she clearly can’t be pregnant.”

Pissed off, Kate hung up the phone and we tried to get to sleep.  I spent the whole night, doubled over in pain and thinking about going to the ER. Instead, I toughed it out and hobbled to my three hour class the next morning.  Finally, at 2:30 I had my appointment.

Waiting nervously for the doctor, I flipped through a magazine, and of course the first ad I flipped to was a Valtrex advertisement.  I got it off my mind, and the nurse summoned me into an examination room.  I explained the symptoms.  The physician assistant came in and examined me.  With one look, she grasped my hand and said, “Honey, you have genital herpes.”
I lost it.  I immediately started sobbing uncontrollably as the PA went to get the nurse who rushed in to hold my hand and wipe my tears.  The PA informed me they didn’t have the materials to do a culture test, but to come back tomorrow.  After apologizing immensely, giving me a numbing ointment, a pamphlet, and my prescription of acyclovir, I left the clinic and walked, as fast as I could, back to my dorm where I was consoled by my friends.

Kate was infuriated and called Shaun who insisted he didn’t know he had it.  Ending the conversation with, “The next time you decide to take advantage of a drunk girl, freaking wear a condom!”

Kate and my friends tried to help me decide what to do. I had to call my mom.  She was my rock, my support, my best friend, and I needed her more than anything.  Trying my hardest not to start crying, I told her that I needed to tell her something and she wasn’t allowed to say anything until I finished. I told her about Shaun, how I didn’t even know we had sex, and what the PA had told me.  She immediately drove to get me in the middle of the night.  We stayed at a hotel in my college town so I could return for my culture test the next morning.

The next day, I couldn’t barely walk.  I went to the clinic to get my culture test taken.  The nurse had to hold my legs apart, I was in so much pain.  My dad is a doctor, so I declined the pain meds the PA offered to prescribe, and my mom and I made the 3 hour trip home.  I spent the next week at home, popping pain meds, sleeping, taking warm sitz baths, and acting as though I had mono so my brothers didn’t get suspicious.  I almost didn’t return to finish out my last three weeks of school.

Although I went back physically healed, my friends tried their best to heal me emotionally by carrying on as nothing was different.  It worked for awhile, but when I returned home for the summer, my life fell apart.  I was still talking to Shaun, who had to wait three months for a blood test, and on a couple occasions, I made the mistake of having sex with him, once even unprotected.

After he stopped talking to me, I felt horrible, like no one would ever want me again.  I contemplated suicide, and my mom still insists I need to see a therapist. A couple weeks ago, Shaun sent me a text telling me his insurance expired so he would have to wait until November to get tested, although he told me he’d been tested at the beginning of July.  I saw through him and told him that I already knew he must’ve given it to me.  The fact that he put himself at risk of contracting it (by having unprotected sex with me) gave it away that he knew he already had the virus.

Today, life is better.  I have only had one outbreak, and I try my best to stay healthy to prevent any more.  My mom always tells me that this isn’t the worse thing that could happen and perhaps, it was a warning sign from God that I needed to step back and examine my lifestyle before something worse happens.  My blood still boils when someone brings up Shaun or unknowingly makes a herpes joke, but I know that I am stronger than this virus.

All those months of my closest friends and parents telling me that genital herpes does not define me have not gone to waste.  Because I have now come to terms with the fact that I have a virus, a very popular one at that, but I still am who I am.  I am still smart.  I am still beautiful.  I am still confident.  I am still optimistic.  And most importantly, I am still me.

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Is this a chance to finally kill the herpes virus for good?

By Maggie Fox, Health and Science Editor

WASHINGTON (Reuters) - U.S. researchers reported on Wednesday they may have found a way to flush out herpes viruses from hiding — offering a potential way to cure pesky and painful conditions from cold sores to shingles.

They discovered that a mysterious gene carried by the herpes simplex-1 virus — the one that causes cold sores — allows the virus to lay low in the nerves it infects.

It does so via microRNAs, little pieces of genetic material that regulate the activity of many viruses, the researchers report in the journal Nature.

It may be possible to “wake up” the virus and then kill it with standard antiviral drugs such as acyclovir, said Jennifer Lin Umbach of Duke University in North Carolina, who worked on the study.

“We are trying to go into animal trials,” Umbach said in a telephone interview.

The Duke team is discussing a potential collaboration with Regulus Therapeutics LLC, a joint venture between Alnylam Pharmaceuticals, Inc and Isis Pharmaceuticals, Inc that specializes in microRNAs.

Herpes viruses cause permanent infections. They head straight to nerve cells, where they stay latent for the life of an animal or person, often causing periodic outbreaks.

Herpes simplex 1 or HSV-1 causes cold sores, HSV-2 causes genital herpes, while varicella causes chicken pox and returns in middle or old age as herpes zoster to cause shingles.

Acyclovir and related drugs can suppress symptoms but only when the virus is active.

IMPOSSIBLE TO KILL

“Inactive virus is completely untouchable by any treatment we have. Unless you activate the virus, you can’t kill it,” said Bryan Cullen, who oversaw the research.

Umbach said that for still unknown reasons, viruses infecting different neurons in the same body activate at different times, making it impossible to eradicate an infection.

Her team found that a gene called LAT controls microRNAs that turn off other genes in the virus.

“The presence of these active microRNAs keep the virus dormant,” Umbach said. “When the virus is activated by stress like UV (ultraviolet) light or a wound, production of (other) genes goes up.”

Then LAT is overwhelmed and unable to keep the virus in check. It wakes up and causes an outbreak.

A drug that would turn off the microRNAs could drive the virus out of hiding and allow all copies of the virus to be killed with acyclovir, she said.

“You would have one cold sore but you would get rid of it,” she said. Curing something more painful, such as shingles, might be a little trickier, she added.

One class of drug called an antagomir might work, Umbach said. These chemically engineered oligonucleotides are short segments of RNA that can be made into mirror images of a targeted bit of genetic material — such as the herpes microRNAs. They would attach and “silence” the microRNA.

The potential market is large. An estimated one in five Americans have genital herpes, according to the U.S. Centers for Disease Control and Prevention, while 100 million have the HSV-1 virus that causes cold sores.

The CDC estimates there are a million cases of shingles every year in the United States alone.

Read the entire article here

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This article is used strictly for educational purposes. It’s not often that I repost them so when I do it just means that I think they are worth checking into.

My story on herpes and my infant with neonatal herpes

This story was sent to me so that I could repost it to share with you on my herpes stories pages… I thought it would be nice to switch things up a bit and post a few true stories on my herpes blog so my readers could find them this way too. If you would like me to post your story please send them to me as I would be more than happy to. You are more than welcome to share a photo and if you prefer to remain anonymous that is fine too… we can just go by your first name only. Ok, this next story now begins…

I have had the herpes simplex virus type 1 cold sore since 2002. Being that type 2 is genital herpes I thought that was the only type of herpes that could be contracted from sex including oral..I was wrong. My ex boyfriend had cold sores on his mouth and without knowing he had them at the time, we had oral sex and that is how I got the disease. I didn’t know it at first. It was a few years ago so I can’t remember all of the symptoms. I just remember a burning and itching feeling down there as well as very bad chills and a fever. I went in to see the gyno and she diagnosed me with herpes type 1, vaginally.

I was devastated and depressed but I got over it quickly because I realized just how common this virus is! Then a year later I met my now husband and we got engaged a year after meeting. We planned our wedding for exactly a year from when he proposed. We then got pregnant and I was ecstatic. This was our first little bundle of joy and we were sooo happy!

Well being the worry wart that I am, that led me to think about neonatal herpes. I was aware of it from doing research on the Internet. I told my gyno. at every visit how worried I was and expressed my concerns. They blew off my concerns with “Oh don’t worry, neonatal herpes is very rare” and that was that. Even though I stated time and time again I wanted a C-section because I heard the baby would have a very very low chance of acquiring the disease if I had the baby via cesarean.

Well about a month before I delivered, the gyno prescribed Valtrex. I thought she prescribed Acyclovir which is a more mild form of the anti-viral med. So I went back a couple weeks later and she gave me an Acyclovir prescription. I took that medicine for 12 days up until the baby was born. I delivered vaginally per doctor’s advice, going against my gut instinct. Well I had NO SYMPTOMS of any herpes outbreak coming on. Truthfully, I even forgot about my whole worrying about the baby getting herpes when I was in labor. I remember the doctor telling me she was putting a fetal scalp monitor in me to monitor the baby’s heart rate I believe. But later on I read that if you have herpes DO NOT let the doctor use a fetal scalp monitor, because that punctures a little skin of the baby and the herpes virus could seep in.

Well, a week after we had our beautiful baby home I noticed a red bump on his leg that later turned into a blister. I honestly still didn’t think anything of it and took him to the doctor for his normal check up and I pointed out the blister and the doctor mentioned to me that she thought it was herpes. My heart sank at that point. All of the worrying before I had the baby came flooding back. It was like an ocean of worry that I had built up all 9 months of my pregnancy flooding me and knocking me down, when I heard those words: “I think it’s herpes”.

Without even having the blood work or any of the testing done I knew in my heart my baby had contracted the cold sore virus from me. We took him to the hospital and they did spinal taps on him and hooked him up to an IV. It was a nightmare I was living. To see my beautiful baby in a hospital, potentially dying or severe brain damage because of a disgusting disease picked up during sex. The thought of that just made me so sick- I felt the world was coming to an end for me..

My husband stood by me the whole time and was there standing strong for both me and him. Luckily he knew I had the cold sore virus and he knew how I always went to my gyno during my pregnancy scared shit. So although we were both scared and horrified, it wasn’t a guessing game as to how he got it. We stayed with our baby for 2 days before we got the results. They came back that he had HSV 1 skin eye mouth disease. So far the spinal taps came back negative- Thank God, I thank God every day. But at the same time he is now almost 5 months old and doctors say he could STILL get encephalitis or the herpes virus can come out and attack his organs. I am very angry at the gynecologists for not listening to my concerns. She should have never used a fetal scalp monitor on me, knowing that I had herpes. She was very careless with my baby and my body- I truly hate this person. To walk around with hatred is no good, but I have to worry every day about my baby’s disease..that could have been prevented provided I had good doctors looking after me.

This is a warning to all women who have herpes and want to or are pregnant. I don’t want other babies out there getting this virus. Please make sure if you choose to have a vaginal birth that the doctors don’t use a device called a fetal scalp monitor. Make sure you request herpes cultures to be taken during your last month of pregnancy to make sure that there is no viral shedding. The virus could be present with no symptoms, known as asymptomatic shedding. I think that is what I had at the time of delivery. It scares me to know that you can have the virus present at the time of delivery and not know it. The doctor can’t do a culture test at the time of delivery because it takes a few days to get the results back.

They say it’s rare for a baby to acquire the disease but it DOES happen. It happened to my baby. If you personally feel it is worth having a C-Section, because that reduces the risk of giving your baby neonatal herpes (There is still a change the baby can get the virus while he/she is in the womb..that is called in utero , meaning they acquired it in the uterus) please get the c- section. I know I will with my next. Although it is a very rare disease, it does happen. 1 in 3000 doesn’t seem like a lot, but if you are the 1 like I am out of the 3000, that ain’t nothing but a damn number. I think because neonatal herpes is so rare, doctors take a pregnant women having herpes lightly… and the consequences to that child are deadly.

Note from Angela:

Obviously I don’t agree that women with herpes should be forced to have C-sections. C-sections are major surgery and should only be used (in my opinion) as a last resort. Furthermore, a baby can not contract herpes while inside of Mom. A mother who has had herpes prior to becoming pregnant shares her antibodies with her unborn child. For those who have yet to read my herpes pregnancy story you can do so here…

I’m sure Laura shared her story as best she could but I’m also suspecting that there might be parts of her story she doesn’t understand. Even so… I went ahead and decided to go ahead and post it because after all… it’s her story to share. If you have read this story and would like to share your opinion as well, feel free to leave a comment.

Having herpes when you’re pregnant

Pregnant and worried about STDS

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My HSV-1 Eye Herpes

I found out my childhood cold sore virus had moved to my eye after a couple of misdiagnoses in 2003 – I was 29 at the time. Extreme light sensitivity, etc. in the high altitude dessert turned my life completely around. With all windows blacked out, I slept during the day and worked from home at night with an eye patch over my affected eye, which made detailed computer work pretty difficult. Other symptoms included, redness, pain, scratchiness, itchiness, blurred vision, runny eyes, general run down feeling, horrible anxiety and depression and as it progressed - I eventually got several flu like symptoms too (in bed for days at a time, fever, congestion, etc.).

After several urgent care visits, I was finally diagnosed with eye herpes a month later by the hospital’s ophthamologist, he prescribed me viroptic and pred eye drops. I finally recovered after a couple months, but then I broke out again to the worst pain I’ve ever experienced. I cut my hair hoping that would stop the most severe headaches of my life. Doctor’s dismissed the feelings I had “in my head,” but eventually after a couple more doctors I got on oral anti-virals too (anti-virals have made an incredible difference!). It took many months to recover from that second outbreak, as I tried going off the drops and oral anti-virals, but I broke out again, and again. Finally we found some very knowledgeable and experienced doctors that got me off drops and on suppression therapy at UCLA’s Doris Stein’s Cornea Division. They have treated me like gold and I’ve gone there ever since.

Almost two years ago I moved a few hours outside of Chicago and I had only had a couple minor flare ups. We called my doctor in Cali and he said to take up to 2000mg of acyclovir if and when the virus acts up, and if it doesn’t clear right up to find a local ophthamologist. I had done very well up until very recently and I had a minor outbreak. Through a series of referrals I found another herpes specialist ophthamologist at the University of Illinois, Chicago. He confirmed my outbreak, switched me to Valtrex and I have another appointment with him in a couple weeks. I am grateful that when there is viral activity present, I now have control over it - I have become aware of what my body needs (usually an increase in anti-virals and a few days of rest/limited sun exposure), and I do well mostly on my own anymore.

I hadn’t done much of my own personal research since I first found out about my disease. I did a little online research, but mainly began therapy to get a better handle on my stress/anger issues. I was pretty frustrated there was limited information about ocular herpes, and with my first year of nothing but poor doctor advice, I didn’t want to further mislead myself with all the “miracle herpes cures” and whatnot out there. I recently did a great deal of research, though, and was pleased to find a little more info available, but I definitely had to dig past all the bogus hooey. Some of which I found was posts on herpes boards from frightened individuals – claims about brain herpes being a HUGE killer that we should all be afraid of it – that frightened me away from learning more about the very rare, extreme cases of my disease. I’ve since studied up on HSV-1 a great deal and I feel more confident that my life will go on even if I lose more vision and/or the virus keeps spreading. Actually when I read that many encephalitis (brain herpes) cases go undetected, because it is so difficult to detect, I wonder if I didn’t already have it when the headaches were so intense. All the other symptoms were there, and I was desperate enough to cut my long hair that I’d been growing out for over 10 years. I have lossed vision and at least two straight years of my life, living in a cave - herpes is not something to be taken lightly, but it’s also not something to be scared and run away from either. It is what it is, a pain in the…;) I think the best thing to do is find the best care for your body and don’t give up no matter what.

I find that generally people are scared to talk about herpes - but the majority of us have one type or another. People don’t know the dangers because they’re scared to get past the stigma or whatever; well I’ve been doing a lot of talking… Some of my family and friends seem scared of me right now for their own personal reasons, but that’s ok, my eye herpes brought about big changes, and that takes time to adapt to for people that don’t understand. (And, well, there are times when I don’t relate to them either…;) Because it’s difficult to go it alone and there aren’t always perfect support groups out there for rarer individual viral strains of herpes – I learned to seek out whatever support that’s available. I now have the best friends a gal could ever ask for and I’m always looking for more. I am so very grateful for those that have really been there for me. I look forward to being there for them too, ’cause I know I’m going to be just fine and it feels so wonderful to help those that have helped you. This is such a wonderfully informative site. Thank you Angela for your amazing contribution – I sure hope many others follow this shining example of getting the word out.

Much love and support,

Heather

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What the Fuck is Happening?

I remember when I was a freshman in high school, I was sitting at a lunch table in the cafeteria with 2 of my friends. A pretty blonde girl walked by, she looked very plainly dressed, and sat at the table opposite of us by herself to eat. I wondered why a girl that pretty and thin wasn’t sitting in a crowd of friends.

One of my friends notices me looking at her, and leans over to whisper in my ear, “That’s Rachel, the girl who has herpes, I heard she had sex with just about every guy in the 11th grade, I bet she’s sorry now.”

“How do you know she has herpes?” I asked.

“Because everyone knows, thats why no one will go near her. Lindsay used to be her best friend in middle school, and she told her. Then when they stopped being friends, anytime Rachel would be at a party, Lindsay would go around and tell every guy that they better not get too close to her, or they’ll get herpes too, so it didn’t take long for everyone to find out.”

I instantly felt so sorry for the girl. Pity. I got the “I’m so glad I’m not her” phrase in my head. But then I also got the, “Well that’s what happens when you have sex with too many guys!” phrase in my head.

I lost my virginity to my best friend at 16, and he lost his to me. We were not dating, nor did we, we just were kinda like, “Hey, we gotta lose it some way right?”.

I scored high enough on tests to graduate high school a year early, and get a full scholarship to my dream college. Then I met my first boyfriend, we were together for 2 years. I went to college for 1 of those two years….100 miles away….and saw him on the weekends. But of course I knew that he would never cheat on me…we were too close for that!

We broke up when I was 18. I left college to come back to my mom’s city, to be close to her. When I was 19, I met my 2nd boyfriend. We took it slow and used protection for the first few months, then we just figured that as long as we were monogamous we shouldn’t need to. He told me he had only slept with 3 other girls, and I had only slept with 2 other guys, so the chances of any strain of any disease being present didn’t even cross my mind. A year went by, we were still going strong, starting to talk about the future, marriage, all that dream stuff.

Right before Christmas, I started feeling soreness in my vagina area, just like an ache. I would touch the sides of my groin and my lymph nodes were huge and swollen. I didn’t pay a lot of attention to it, I figured it was just some bug my body was trying to get out. Until I peed one night. I sat on the toilet, started to pee, then I felt this burn, like someone literally lit a match right on my vaginal lip, by the opening. It was a burn that jolted through my whole body, it hurt so bad my body automatically stopped peeing, and I just doubled over onto the floor cupping myself. All I could think was, “WHAT THE FUCK IS HAPPENING?!”.

After a few minutes it subsided, and I grabbed for a mirror. I looked down there and saw a small, the size of a baby’s pinky finger nail, white lesion. I freaked. I was on the internet faster than a bullet. All the pics I searched on Google for “herpes”, “lesion”, “genital sore”, didn’t look anything like what I had. they all looked like a cluster of small red pimples, when I had a white open sore. I was slightly reassured.

When the next day came, and my blister hurt so bad I could barely get into my car, I knew I had to go the doctor. I was very open with my boyfriend about it, assuring him and myself that it couldn’t be an std, as long as we didn’t cheat on each other, that it must be something else so lets just go get a test and be sure. I went to an urgent care center, and got a culture swab, the doc apparently not caring how painful it was, because I started to cry it hurt me so bad. He said I had to wait 7 days to find out, and that the results would be sent to my regular doc. I couldn’t wait that long.

After three days I got an appointment in to see my regular doc, by then the blister was bearable, but still painful. My doc said that there was no point in taking another test if i already did one, but she could at least look at it and tell me what she thinks. As I was spreading my legs, I asked, “So, you’ve seen what std’s look like, I mean you can probably guess what it is right?” She said maybe. As soon as she looked at my horrible lesion, I could see the disappointment in her face. She said, “well, it looks like herpes to me….sorry.”

I just sat there silent. What do I say? Your sorry? Yeah I bet you are. Then I switched to “but its possible that its not, I mean we can just wait for the test results”. She agreed that we should wait. The whole drive home I kept telling myself that the doc didn’t know what she was talking about, that logically there was no WAY that I could have herpes. It was just impossible. I had only slept with 3 people. I knew girls who had slept with 30 guys and didn’t have an std.

Well as I’m sure you can guess, 4 days later, my Doc called me, in the middle of work mind you, to tell me that the test came back positive for HSV2. Before I freaked out, I calmed myself down enough to ask her some questions about it.

“So what are my options now?”

“You take one acyclovir pill every other day for the rest of your life, if you miss one, then the herpes will come back 10 fold and you will have about 20 of those little sores” (that’s not true! - Angela)

“How do I know who I got it from?”

“Unless you have cheated on him, you got it from your boyfriend. If it was anyone before him, you would have known it by now.” (that’s not true either - Angela)

“What happens if I want to have baby now?”

“You can get inseminated by your boyfriends sperm so that you don’t have unprotected intercourse, and you will have to have a C-section” (that’s not true either, what an idiot of a doctor! - Angela)

“So I can’t have sex with my boyfriend even though he has it?”

“Not without a condom. If you don’t wear one, you will just re-infect each other over and over again, making it worse.” (again.. that’s not true! - Angela)

What else was there to say? This doctor had summed up the rest of my love life in one short sentence: It is over. I was 20 years old, had not cheated on my boyfriend, and was being told my love life was over. It was all I could do to swallow my tears and go back to finish my shift at work. I think I had to run into the bathroom to sob about 10 times until I finally got to go home.

So what did I do when I got home? I took it all out on my boyfriend, the guy who I knew gave it to me. I said horrible things to him, cried about how he ruined my life forever, and because of him I am disgusting and no one will ever want to touch me, I really let him have it. I let him have it so bad he broke down crying, saying how he just didn’t understand how he gave it to me, and that he swore he didn’t know, and didn’t cheat on me. He kept apologizing. I wasn’t listening, I was too busy screaming about what a lying, cheating, disgusting person he was.

The next day I convinced him that he needed to go to the doctor to get a prescription for it as well, so that he didn’t get any break outs. He said he didn’t understand why he needed to take medicine for it if he hasn’t even had a breakout, but went along anyway. He was showering me with gifts and crying and telling me how much he loved me and how sorry he was the whole day. I was a total b*tch to him. When we get to the doctor she said that in order for her to write a prescription she just had to test him to show positive results. We said no problem, she drew his blood, and said to wait for a letter in the mail with the results.

Five days goes by, I am up at work again. I am a little more calm about the situation, but if I think about it too much I start to cry again. I just couldn’t quit thinking, “if only I had never met him my life wouldn’t be ruined right now”. The phone rang, it was my boyfriend. He said he got the letter.

I said, “so when do you go pick up your pills?”

He said, “I guess I don’t, the letter says my test was negative.”

Silence……………I asked him to repeat what he just said, then hung up.

I felt faint. He didn’t have it? That’s impossible. There is no way. When I got home, I had never felt so bad. I expected him to be all high and mighty, and get mad at me for blaming him. I expected him to blame me. But he didn’t. He was just as loving and caring as he was before. He just acted like nothing was different. He still wanted to be with me. Crazy huh? I still can’t believe it.

Over the next few weeks, I did a lot of herpes reading, both in books and on the web, and I realized, that most of what my doctor told me was wrong. Most of what I had ever heard about herpes was wrong. The more I read the more I couldn’t believe how little facts people actually knew about herpes, and how common it is.

They say 1 in 4 people have genital herpes. They say 40% of women who have vaginal birth to children have genital herpes. This relieved and scared me. Too many people are infected and don’t know it.

It has been 4 months, and I haven’t had another outbreak yet. I am still taking it a day at a time, and am still in the acceptance stage. One day I would like to be comfortable enough to go to schools and talk to teens about stds, and give them some REAL facts. Maybe then the odds won’t be so against us.

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All the comments that you see in RED throughout the story I (Angela) put those there so that people don’t freak out when they read the story. Unfortunately there are healthcare professionals that obviously have no idea what they are talking about.

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CALL FOR HSV & HPV CAMPAIGN: Do YOU have what it takes? :)

I am the red-dot girl, and I am ready to start throwing around ideas. I was thinking, wouldn’t Glaxo smith and other big pharms stand to make tons of $ if a slew of people found out they’re infected?

Insurance co.’s dont want to pay for it, but pharm co.’s will gladly shell out more med’s at full cost for the uninsured. What if we could partner PUP and Big Pharm or Glaxo (get $ from them as a grant basically) to fund an awareness campaign and free HSV & HPV testing?

Or perhaps to fund inclusion of testing for these 2 in standard STD screens? Perhaps they are affiliated with clinics and physicians that could perform the testing (because these folks need to be paid as well); there’s got to be a way that these Companies can all benefit from spreading the knowledge and testing; more $ from prescription meds?

(Since 90% of those that have genital herpes dont know they have it, even if we could reach 50%, thats a lot of scared folks buying Valtrex, Acyclovir, etc. because the stigma is still in full effect; hopefully we can get to the point that we realize how prevalent it already is and that will neutralize it eventually while slowing down new transmissions.)

Sometimes I think that the difficulty and $ that goes into testing is a result of pharms and ins. co’s wanting to wait until the population of those infected becomes so large that we can’t do anything about it since so many people have it, very much like HSV 1 (oral herpes-80% of population has it by adulthood).

I believe someone told me that when he was diagnosed (17 years ago) the HSV 2 stat. was 1 in 10 people. If thats true, than the current number had doubled since then (1 in 5), probably as a direct result of the 90% that dont know they have it, and the overall general lack of knowledge about it.

My question is:

If nothing changes to create awareness and inclusion of HSV & HPV in standard screens, will the number become 1 in 3 by 2020? Can we help stop that? Or let it ride out, since the basis of HSV 1 having less of a stigma is the fact that 4 out of 5 will have it?

I would love to know your thoughts on this. If you have something to say about this please leave a comment and then write to me (rebeccafroe@yahoo.com) so we can collaborate and come up with different ways that we might be able to make a difference!

If you have something to say, have an idea, or just need a place to network the information please send me your write up and I will be more than happy to post it and help you spread the word. - Angela

Let’s talk about awareness and advocacy!

Disappointing Results from Herpes Research Trial

Results of a recent international clinical trial indicate treatment of genital herpes with daily, suppressive antiviral treatment does not reduce the risk of HIV infection. In what lead researcher Connie Celum called “a surprising, disappointing and important result for HIV prevention,” there was no difference in rates of HIV infection between individuals in the study who received treatment with the antiviral drug acyclovir and those who received a placebo.

The results of the study, presented at the 15th Conference on Retroviruses and Opportunistic Infections (CROI) held February 3-7 in Boston, found that there was no reduced susceptibility between those on the medication versus those not on it. Researchers believe that a possible reason for the failed approach is due to the fact that acyclovir doesn’t completely rid the body of herpes, nor does it suppress all outbreaks. Dr. Celum suggested the possibility that HSV infections in trial participants did not respond as well to acyclovir than trial planners had anticipated. She also indicated that the research team may also have underestimated the frequency of reactivation of HSV-2 as well and genital immune response.

Despite the disappointing results, Dr. Celum emphasized that additional research is being conducted on the link between HSV and HIV infection that may yield more positive results. Specifically, she cited the “Partners in Prevention” study, which is examining whether or not suppressive therapy in individuals co-infected with genital herpes and HIV reduces their risk of transmitting HIV to sexual partners.

Note: This is an ASHA e-news letter. If you would like to receive notices like this one in your e-mail box be sure to check out www.ashastd.org

How many years did it take you to stop having outbreaks from sickness?

When I was first diagnosed with genital herpes type-2 I got outbreaks (so it seemed) all the time. If I wasn’t having my period, I was having an outbreak. It seemed in the beginning that I got them every two to three weeks and sometimes more often than that.

Eventually I started to track my outbreaks on a calendar along with the days that I would take my Valtrex and how many I would take. For outbreaks I would take 500 mg twice daily. I also tried Acyclovir and Famvir and eventually decided that the Valtrex was kicking the outbreaks in the butt much quicker.

After tracking my outbreaks and checking to see which medicine was working the best for me, I decided that I would like to go on suppressive therapy because I was so sick and tired of having to deal with outbreaks all the time. So I did, I went on suppressive therapy for the next two years taking 500 mg once daily but always having enough Valtrex on hand to bump up my dose to 500 mg twice daily just in case I did get an outbreak while I was on suppressive therapy.

It was 1995 or 1996 when I contracted herpes and now it’s 2008. So you see, I’ve had genital herpes for a long time. I don’t really deal with outbreaks any more and I am no longer on suppressive therapy. In fact, the only time I put myself back on suppressive therapy was the last 6 weeks or pregnancy with my last two babies. I did that to do what I could to prevent outbreaks during labor and delivery. It seemed to do the trick because I was able to have vaginal deliveries with no complications.

You can read all about that on my Herpes Biography

Herpes Simplex and Pregnancy

As an Expectant Parent eagerly awaiting the birth of your new baby, you are probably taking a number of steps to ensure your baby’s health. One step many experts recommend is that you become informed about herpes simplex virus (HSV). This common virus is usually a mild infection in adults. But in infants, HSV can cause a rare, but serious, illness.

What is herpes simplex virus?

HSV can cause sores near the mouth (oral herpes or “cold sores”) or sores on the genitals (genital herpes). HSV-1 is the usual cause of oral herpes, and HSV-2 is the usual cause of genital herpes. But either type of HSV can infect either part of the body. Either type can infect a baby.

How common is herpes simplex?

Some 80% of American adults have oral herpes (”cold sores”), and more than 20% have genital herpes. You can get genital herpes if you have sexual contact with a partner who is infected, or if a partner who has an active cold sore performs oral sex on you. Most people with HSV don’t know they are infected because they have no symptoms, or symptoms too mild to notice.

How can herpes simplex spread to an infant?

• Herpes simplex is most often spread to an infant during birth, if the mother has HSV in the birth canal during delivery.
• HSV can also be spread to the baby if he or she is kissed by someone with an active cold sore.
• In rare instances, HSV may be spread by touch, if someone touches an active cold sore and then immediately touches the baby.

How can herpes harm a baby?

HSV can cause neonatal herpes, a rare but life threatening disease. Neonatal herpes can cause eye or throat infections, damage to the central nervous system, mental retardation, or death. Medication may help prevent or reduce lasting damage if it is given early.

How many babies get neonatal herpes?

Less than 0.1% of babies born in the United States each year get neonatal herpes. By contrast, some 20-25% of pregnant women have genital herpes. This means that the great majority of women with genital herpes give birth to healthy, happy babies.

Which babies are most at risk?

Babies are most at risk for neonatal herpes if the mother contracts genital HSV late in pregnancy. This is because a newly infected mother does not have antibodies against the virus, so there is no natural protection for the baby during birth. In addition, a new herpes infection is frequently active, so there is a real chance that the virus will be present in the birth canal during delivery.

What about pregnant women who have a history of genital herpes?

Women who acquire genital herpes before they become pregnant have a very low risk of transmitting the virus to their babies. This is because their immune systems make antibodies that are passed to the baby through the placenta. Even if HSV is active in the birth canal during delivery, the antibodies help protect the baby. In addition, if a mother knows she has genital herpes, her doctor can take steps to protect the baby.

PROTECTING THE BABY: WOMEN WITH GENITAL HERPES

If you are pregnant and you have genital herpes, you may be concerned about the risk of spreading the infection to your baby. Be reassured that the risk is extremely small - especially if you have had herpes for some time. The following steps can help make the risk even smaller:

• Talk with your obstetrician or midwife. Make sure he or she knows you have genital herpes.
• At the time of labor, check yourself for any symptoms in the genital area - sores, itching, tingling or tenderness. Your health care provider will also examine you with a strong light to detect any signs of an outbreak.
• If you have an active outbreak at the time of delivery, the safest course is cesarean section to prevent the baby’s coming into contact with virus in the birth canal. If you do not have an active outbreak, you can have a vaginal delivery.
• Ask your doctor not to break the bag of waters around the baby unless necessary. The bag of waters may help protect the baby against any virus in the birth canal.
• As your doctor not to use a fetal scalp monitor (scalp electrodes) during labor to monitor the baby’s heart rate unless medically necessary. This instrument makes tiny punctures in the baby’s scalp, which may allow herpes virus to enter. In most cases, an external monitor can be used instead.
• Ask that a vacuum or forceps not be used during delivery unless medically necessary. These instruments can also cause breaks in the baby’s scalp, allowing virus to enter.
• After birth, watch the baby closely for about three weeks. Symptoms of neonatal herpes include blisters, fever, laziness, crankiness, or lack of appetite. While these can be symptoms of several mild illnesses, don’t wait to see if your baby will get better. Take him or her to the pediatrician at once. Be sure to tell the pediatrician you have genital herpes.
• Think positively! The odds are strongly in favor of your having a healthy baby.

PROTECTING THE BABY: WOMEN WHO DON’T HAVE GENITAL HERPES

The greatest risk of neonatal herpes is to babies whose mothers contract genital infection late in pregnancy. While this is a rare occurrence, it does happen, and can cause a serious, even life-threatening, illness for the baby. The best way you can protect your baby is to know the facts about HSV and how to protect yourself. The first step may be finding out whether you already carry the virus.

How can I get tested for genital HSV?

If you have symptoms, the best test is a viral culture. To perform this test, your health care provider must take a sample from an outbreak while it is active, preferably on the first day. Test results are available in about a week. If you don’t have symptoms, a blood test can tell you whether you carry HSV-2, the type of herpes that usually infects the genital tract. (A blood test may also tell you whether you have HSV-1, but in many cases this simply means you have oral herpes.) The most accurate blood test is the Western blot, available from the University of Washington at Seattle. Your doctor can find out more about the test by calling (206) 548-6066. Other accurate tests, such as immunoblot assays, may be available through reference laboratories soon. Your doctor can find out more by calling (888) 703-4455.

How can I make sure I don’t get genital HSV?

If you test negative for genital herpes, the following steps can help protect you from getting an infection during pregnancy:

• If your partner has genital herpes, abstain from sex during active outbreaks. Between outbreaks, use a condom from start to finish every time you have sexual contact, even if your partner has no symptoms. (HSV can spread when no symptoms are present.) Consider abstaining from sex during the last trimester.
• If you don’t know whether your partner has genital HSV, you may wish to ask your partner to be tested. If your partner has genital or oral HSV, there is a very real chance that you may acquire it unless you take steps to prevent transmission.
• Do not let your partner perform oral sex on you if your partner has an active cold sore (oral herpes). This can give you genital herpes.

What if I contract genital HSV during late pregnancy?

If you experience genital symptoms, or believe you have been exposed to genital HSV, tell your obstetrician or midwife at once. However, be aware that herpes can lie dormant for several years. What appears to be a new infection is usually an old one that is causing symptoms for the first time. Talk with your provider about the best way to protect your baby. When a pregnant woman does contract a new genital HSV infection during the last trimester, some providers will prescribe the medication acyclovir. Some recommend a cesarean delivery under these circumstances, even if no outbreak is present.

How can I protect the baby after birth?

A baby can get neonatal herpes in the first eight weeks after birth. Such infections are almost always caused by a kiss from an adult who has a cold sore. To protect your baby, don’t kiss him or her when you have a cold sore, and ask others not to. If you have a cold sore, wash your hands before touching the baby.

FOR PARTNERS OF PREGNANT WOMEN

If your partner is pregnant, and she does not have genital HSV, you can help ensure that the baby remains safe from infection. Find out whether you have genital HSV (see “How can I get tested?”). Remember, more than 20% of Americans do have genital HSV, and most do not have symptoms. If you find that you have the virus, follow these guidelines to protect your partner during the pregnancy:

• Use condoms from start to finish every time you have sexual contact, even if you have no symptoms. HSV can be spread even when no symptoms are present.
• If you have genital outbreaks, abstain from sex until the outbreak has completely healed.
• Talk with your health care provider about taking antiviral medication to suppress outbreaks and to reduce the risk of transmission between outbreaks.
• Consider abstaining from intercourse during the last trimester. Explore alternatives such as touching, kissing, fantasizing, and massage.
• If you have cold sores (usually caused by HSV-1), avoid performing oral sex on your partner when a cold sore is present.

Here are some links you may find helpful:

• Herpes and Pregnancy
• Discussion board for pregnant women with herpes

Valtrex / Acyclovir is considered safe to use while pregnant

Valtrex is actually a very well studied drug. It is a prodrug for acyclovir, which has been around for 30+ years. Valtrex turns into acyclovir after it is absorbed which allows your body to get more of the drug into your system for longer (which is why you take Valtrex less frequently than acyclovir).

Although it has not been officially tested for use during pregnancy (very few drugs ever are as to do this would require testing on pregnant women … not a thing most people are happy with), it is considered safe to use when pregnant — a category “B” medication. There was at one time a pregnancy registry for acyclovir (the drug your body converts Valtrex into) that followed pregnant women. Somewhere close to 1000 women taking Valtrex while pregnant were followed and the rate of defects amongst that group was considered to be the same as for women not taking any medication. There was for a while a registry for Valtrex as well, but it ran for a shorter period of time and, although the results were similar, the number of women followed was not enough to draw as strong of conclusions.

Taking Acyclovir or Valtrex suppressively during the last weeks of pregnancy is recommended. Even though you are passing the antibodies onto your infant, the suppressive therapy should prevent you from shedding the virus and/or having an outbreak. During the last weeks of pregnancy your child is less likely to suffer any ill effects from any medication you may take. This is not to say you should not weigh your options and make your own decisions.

I took Valtrex throughout my pregnancy and my child is fine and beautiful. I was comfortable enough with the drug’s profile that I told my doctor up front that I intended to take the drug throughout my pregnancy to protect my partner.

I doubt you need to be concerned about allergic reactions, especially if you’ve taken the drug before as you would have had the reaction then. Valtrex/Acyclovir have very low allergic profiles (aka even people with a bad history of allergies normally don’t react to them). Antivirals are completely different beasts from antibiotics and just don’t wreak the havoc on your body that an antibiotic can. Valtrex/Acyclovir very specifically targets herpes by mimicking a substance the virus needs to reproduce. When the virus grabs onto the antiviral, the antiviral gets in the way of the virus being able to reproduce. The substance Valtrex/acyclovir mimics is not a substance your body needs so your body doesn’t tend to react to the drug much.

I’m trying to break down a complex bit of biochemistry here, so I may be guilty of oversimplifying how Valtrex/acyclovir works. There are some resources on the net that go into this stuff in detail and you may want to read up on them if you are interested in a more advanced explanation. - Lorraine

If you have something to say about herpes and what it’s like to be pregnant when you have herpes I’d love to hear from you. You can send me bits of advice OR your own personal story and I would be more than happy to publish it so that we can work to help people that don’t know enough about this to make a decision for themselves.

As with anything health related please see your own doctor. Our personal experiences shared do not indicate truth for everybody that is in similar situations. The information shared is based on our own personal experiences. No two herpes cases are alike.

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When you are pregnant and have herpes