How effective is suppressive therapy?

Help help help! How effective is suppression therapy? With Valtrex? My mate doesn’t know I have it and our sex life was finished. then he went and got meds to start it up again. Now I’m panicked. I rarely have outbreaks that I know of. And online articles seem confusing … “shedding is reduced to 8% of the days with suppression therapy” means nothing to me. I’m so confused as to what my odds are to not transmit the virus to him. I can’t find anyone who really knows. My dr. even isn’t sure!!! Do you know anything that may be helpful to me??? - S

Suppressive therapy reduces outbreaks to the point that people don’t experience them like they did when they were first diagnosed. So if outbreaks are a problem for you then suppressive therapy would definitely be the way to go.

For those couples where one has genital herpes and the other doesn’t, suppressive therapy is helpful in reducing transmission to the partner that doesn’t have it. In fact, suppressive therapy reduces transmission by up to 50%. You add condoms to that and I would say that is pretty good protection.

Suppressive therapy also reduces asymptomatic shedding by about 95%. So for those people that do not get outbreaks that they can see or feel.. then they would be reducing the chances of their partner contracting it from them even further by being on suppressive therapy.

It’s really up to the couple to figure out what they want to do though.. that’s why it’s so important to talk about your sexual health, your std status, and make a date to go and get tested together so you will both know and understand what you are dealing with before you have sex.

If you decide that you have more questions feel free and post those on the Shut Up N Post! STD Message Board, ok? - A

Things Happen

I grew up in a family that wasn’t against premarital sex, but was warned of the risks of unprotected sex. my sisters were 5 and 8 years older than me, and i saw some of the mistakes they made involving sex. one of my sisters had a herpes scare when she was about 18 or 19. i swore to always use protection because not only did i not want to end up with herpes or something worse, but i saw how my other sister made fun of her behind her back.

well, now i’m 18. i work front desk at a hotel and get hit on a lot. i usually don’t accept. then, a construction worker who would be staying there for months hit on me, and something attracted me to him. even though i know i could get fired for having any kind of relationship with him, i went for it. he told me everything i wanted to hear, and without pressure, i slept with him. things were fine, i never had any symptoms.

we continued our relationship for weeks and weeks, and he told me he wanted something more than sex before anything happened. well, a little over a month into it, my vagina started to hurt really badly. i figured it was from rough sex we had the night before, and really thought nothing of it…until it became worse later that night. then i put it off on the new soap and laundry soap that i had used.

the next day, things were so much worse. i had all these nasty painful bumps all over and my vagina was swollen and itchy. i went to the gynecologist the next day and after looking for about 10 seconds, she automatically said herpes. i’m still not entirely convinced it’s herpes.

i don’t get the culture results until next week, but she told me that even if it comes up negative, she still says its herpes. i was put on valtrex, and really made to feel like a slut. regardless, i’ve never felt so much pain in my life. it hurts to sit, it hurts to walk, it hurts to urinate, everything hurts.

regardless if it turns out to be herpes, a severe yeast infection, or an allergic reaction, i’ve learned my lesson. not only did my doctor make me feel like a slut, a classmate at college filled my herpes medication, and i cried the entire day feeling dirty and degraded.

i made the mistake, and now i’m dealing with it. i told my mother, and she was more supportive than i ever thought she would be. she didn’t get mad, and she didn’t judge. i’ve been praying all night that i don’t have herpes, but even if i don’t or even if i do, the lesson is definitely learned.

and now i know that these things can happen after even just one time of intercourse without proper thought before hand. even if you think you know the person, even if they have no symptoms, things happen. i just hope someone out there doesn’t make the same mistakes.

This story was submitted by A. If you’d like to submit your story to be posted please do so. To read the rest of the stories submitted please visit: Inspirational True Stories

Do you have OB every day if you dont take meds?

Here’s the situation:

I do not know if Im having a OB no sore on my genital, my butt hurt some and between my legs, also feels like I have swollen lymph nodes in my armpits and near my chest. what can this be. I feel like this all the time almost. do you have OB every day if you dont take meds?

Here’s what I think:

I don’t know if you are having an outbreak either. The best thing you can do is to track your symptoms and stay in touch with your doctor who will be the best person you can count on to help you. You might even give your doctor a call and communication what’s happening to you so they will know what to do. After all, what if your symptoms are not herpes related?

I have had genital herpes for 13 years so no, I do not get outbreaks every single day. In fact, I hardly ever get outbreaks as compared to when I first contracted herpes. If I do get an outbreak I tend to take 500 mg of Valtrex twice daily and that seems to do the trick in about two or three days time.

Hope that helps!

I truly think he cares for me, but …

From the Feedback Form

Hi, I have been living with HSV-1 for 3 years now, and am still dealing with the “relationship” issues.  I contracted it from my ex-boyfriend who was sleeping with 3 other women during our relationship.

I recently met a “normy” and we had the talk early on.  He decided that he would accept me because what I have does not define who I am.  I was so happy and relieved to finally meet someone who realizes that fact!

He too is not perfect, and one imperfection for him was that he couldn’t keep it hard during sex. (he’s an older gentleman, 48, with a bad heart and on meds) I accepted him for that, because, hey, who am I to judge. lol.  I am a very open minded person, anyway.

Well, just last night we talked about some things and it was brought out into the open that it’s not nature that causes him to not keep it hard, but the use of a condom. Wow!  I thought, not knowing how to feel about that.  He said that he knows my great qualities and we have so much chemistry between us, but when it comes to sex…he’s really nervous!

I am on suppressive therapy with Valtrex, always have been.  He’s performed oral sex on me quite a few times, and I on him.  Now, I did mention, that if he’s not using a condom with other women before me, then he’s taking an even bigger risk.  He feels that because he doesn’t sleep with a lot of people, then he’s not at risk.  He’s so wrong, and I didn’t want to be the one to point fingers, cause I am no poster child.

My heart is so broken, I felt like just when I thought I had accepted that I have HSV-1, here and now with a broken heart, I’m no so sure….again!  What can I say to him, if anything, or do for that matter to make it easier for him?  To put his mind more at ease?  I truly think this guy cares for me, but the sex issue is weighing too much on his mind.

From Angela aka Yoshi2me

Why don’t you sit down and talk about making a date to go and get tested together so you will know what his status is and he will too?

It’s not all about the fact that you have genital herpes type-1. I think you have a right to know what his status is so you will know what you are dealing with too, right?

Or am I not understanding your question?

What do I do to get through this?

From the Feedback Form

Hi my name is C* I am 37 years old and I’m really having a hard time emotionally dealing with this right now. I was diagnosed with genital herpes about 6 months ago and aside from being really good about taking Valtrex when I have an outbreak I have tried to just pretend its not real.

I recently met a man who I have become very fond of and he with me. We were really falling for each other. It has not been a sexual relationship yet but was heading there. The other night when he told me he adored me (I have waited a long time to hear that from a fabulous guy) and thought I was perfect for him. I knew I could not keep it from him any longer. In all fairness he had to know what he was dealing with.

When I told him he was super about it. Amazing really. He told me it was just an obstacle we would have to work around. I couldn’t believe my luck I really want to make something work with him and he was so understanding. I guess I shouldn’t have felt so lucky because since then (2 days) I haven’t talked to him. He has put off returning my calls by sending me vague sounding text messages. I don’t know what to do.

Is this going to be the story of my life from now on because I have herpes? I’m scared and lonely and don’t know if the one person I want to be with in whole world is now trying to figure out a way to just get me out of their life because of the herpes. I don’t blame him really, its a lot to absorb and take on.

This is the first time I have had to tell a potential lover about it and it took everything in me just to say the words. I know if it weren’t for the herpes he would want to be with me. What do I do to get through this? I’m really messed up about it. I just really need some advice please.

From Angela aka Yoshi2me

I think you should take it one day at a time. Maybe  he just needs time to think about and let everything you told him sink in. He might be taking some time to do some research and to find out what it’s going to mean for him, for you, and the two of you.

Have you heard from him since then? If he doesn’t give you a call soon, pick up the phone and call him to see how he’s doing. Keep it light and airy. I know this is  hard but try and keep yourself preoccupied with other stuff. Stay busy so that you can try and take your mind off things.

He may OR may not be able to handle the news. Time will tell and this will definitely test his commitment to your relationship. You are actually about to find out just how much he really is into you - or Not!?

Try and remember that this isn’t only about your STD status. You have a right to  know his STD status too. He may already have herpes and not even know it. What if he has something entirely different.?

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.

Share your courage with others!

I received HSV type 1 from my boyfriend

I received HSV type 1 from my boyfriend (whom I am still with) from oral sex about 10 months ago. I know that herpes always stays with you and even if you don’t have an outbreak it sheds and can be spread. However, I have not had any outbreaks since my first one and my boyfriend already has HSV 1.

I just went to my gyno and he told me to go on Valtrex daily; however, all he knows is I have herpes. He didn’t ask me any questions about my specific situation. I put in my prescription and it happens to be a lot of money which I just don’t have sadly.

My question is: Which is better; daily therapy or episodic treatment? Even if I don’t have a lot of outbreaks, should I be taking Valtrex daily? If so, I will find a way to pay for it, I just wanted someone else’s advice.

I don’t know who else to ask because I don’t know anyone else that has it… If you could message me back with an answer that would be so helpful.  Also, your site makes me feel so much better about myself. Thank you so much for doing what you do!

Here’s my response

I don’t really see why there would be a need for you to be on suppressive therapy since 1.) you don’t get that many outbreaks and 2.) you and your boyfriend both have herpes.

It’s not as if you were trying to keep him from contracting herpes since he already has it, right?

Now I could see going on suppressive therapy if you were having too many outbreaks OR you were trying to keep your partner from contracting herpes but that just isn’t the case with the situation that you described, ya know?

Hope my response was helpful for you…

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

Send me your story

I won’t settle because I’m more than that and so are you!

I’ve been diagnosed just for 4 months. My “donor” knew he had it and chose not to disclose. So, from the betrayal and my new dx, I have done the crying, feeling undateable, unlovable, angry and betrayed phase.

But, kept my faith in God. It was trying at times, but still there.

I know that rejection is hard. But, I feel as I’ve been told by Angela and Libby that not everyone will respond that way. You don’t have to settle. And, so, I haven’t. I was told that I would be laughing at what I had felt originally next year. I think, I will be coming close to that assumption.

I’ve met guys that have had “H” and those who haven’t. I didn’t want to go into a relationship with someone who had it because my choices were “now” limited. Then you are just wasting their time and yours. It has the be the real deal. In other words, don’t just be with someone because you share the same “skin condition”. Have the same beliefs, value system, interests, compatibility, etc.

I have told five guys that didn’t have it. One said, “That’s common, I always see those Valtrex commercials at night. I didn’t end up having a relationship with him. He said, “but, I’m willing to accept you”. But, I told him that I wasn’t willing to accept him.

Another guy, said “he was scared of it”. But, has since changed his mind and called me to ask me out. I didn’t call him back.

Another guy said, it’s all about balance. And that I had a lot of other things to offer.

Another guy said, he has friends that have it and he dated a girl in college that had it. He chuckled. He thought I was going to tell him something “serious”.

And, I just told someone I had went out with just once. He told me he didn’t care and still wanted to see me. He said that a guy that would care was just looking for casual sex and not love or anything long term. . And, they weren’t worth my time. He also offered to go to my local herpes help meeting to tell others the same. He wants to let my group know that those that reject aren’t worth your time. I told him and he said he doesn’t care and doesn’t change his opinion of me at all. He told me that he respected me telling him and that it must have been hard.

Now, I don’t know where I will end with this. Or, even, if any relationships will evolve from what I have so far experienced. I still won’t settle for someone just because they will accept me or that we have the same dx. I’m more than that and so are you…..

So, thanks Angela & Libby and everyone else for being their for support.

Part of the serenity prayer…. It’s what keeps me going…

God, grant the serenity for the things that I cannot change (Can’t change the fact that I have herpes and that some people will prejudge me)

The courage to change the things I can (my attitude, and how I CHOOSE to react to it. How I choose to come to peace with it. I can only control my reactions and my journey to having peace with it and how it will or will not define me. No one else can.. And choosing to forgive those that have harmed you. Its not for them, its for you. This was the HARDEST for me. But, it is possible, even without an apology.)

And the wisdom to know the difference….

~ F

* You can also find Angela and Libby hanging out over on Picking Up the Pieces & Shut Up N Post!

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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