Anxiety out of control

[BreeBree92]

Well... Here goes. I'm new here.

 

I just found out two weekends ago that I (potentially.... I'm still grasping for hope.. though two different doctors said it looked like I had the big H) have herpes. Over these last two weeks my anxiety has me doing somersaults through life and it sucks. So here's what happened:

 

My boyfriend and I have been very happy these last two and a half years, with the exception of a slight hiccup last May. We met online and we're long distance, so he only comes to visit once every three months or so. But, we need to rewind about 7 years. I was 14. And reader beware... there's going to be dirty deets.

 

It was all the rage to have sex in middle school, don't you know? Well, I was promiscuous. I had sex with a few people who's name I had just began to allow to roll off of the tip of my tongue... some who didn't even speak the same language as me. Well, their name wasn't the only thing I allowed to roll off of my tongue. Two weeks later, I couldn't eat. I was on a fully liquid diet because the thought of food scraping those definite white strep bumps was horrifying. It got to the point where I couldn't stand the pain anymore.. Off to the E.R. I go. 14, scared that I had strep throat and I would have to miss school until I was better.. Until I heard those three little words. "You have herpes." Um... come again? It's white bumps... down my throat.... you're stupid.. this is strep.

 

No. Nonononnonononono. It was herpes. I had to go to class... bumps and all. "Why aren't you eating lunch, Bree?" "Oh.. I'm not hungry." Nobody could ever find out.

 

Flash forward 4 years. I wasn't exactly the prettiest barbie in the toybox. Sad, hurt, worried I would miss the one thing every girl dreams about. Prom night, right? Well.. no.. for most it's marriage... but... I was excited about prom. I just had nobody to take me... so.. I resorted to the interwebs. And then we met.

 

My boyfriend has been one of the best people I could possibly ask for in everything I do. 8 years older than me... so I missed my prom because the school had rules against that. But, whatever. That dreaded day came, however. The day when I had to disclose. I was pretty nonchalant though.. "Hey so yeah, just thought I'd let you know... sometimes I get these weird canker sores down my throat." If you're smart... put two and two together. It's the herpderp. His response "Oh... Alright. I sometimes get canker sores too." Oh... cool.

 

Well..... so... he accepts me even with all of my flaws and I thank him for that.

 

Skip forward to two weeks ago.

 

Things were hot and heavy. We rented a hotel room, like we always do when he comes up for our mini vacations. We were lip locking and touching and all of the good stuff.. well... we forgot he had one of these said canker sores. And he went to the nether regions of my body..... And well... that was that.

 

Two days of hot steamy sex later... ow. Why is my clit so sensitive? Must have been the rough sex we had mixed with overstimulation... but what explains these two little bumps? That's when the siren went off in my head. Let's go to breakfast before you take me to the E.R., babe. I don't want to starve before finding out bad news.

 

"Well... that looks like it might be the start of a herpes outbreak."

 

The tears started welling and the anxiety ran high as I looked up at my supportive boyfriend's face.... The thing running through my head "Pleasedon'tleavepleasedon'tgoawaypleasestaywithmepleasegoddon'tgo." He stayed. He promised he would. He held me and took another vacation day to be by my side.... He spent $1500 that weekend just to be here and turned right around the next weekend and spent another $500 or so to be with me again because I feel like he's the only thing that can calm my nerves.

 

I've started coming to terms with this awful disease... but my anxiety flares at the sight of what might even be a red mark..... I'm so concerned I'll transmit it to my eye... my hand... my legs... I'm a huge ball of stress and I can't even begin to stop crying. I saw a red bump next to my eye and flew in to my doctor. "Bree, honey, calm down. It's a red mark from overly stressing and rubbing your eyes. That looks nothing like ocular herpes."

 

Ugh. Well, I guess that's my story, thus far. Will the anxiety ever stop?

[HerryTheHerp]

Well, first things first, you need to get a blood test. What you're describing could be a lot of different things, herpes being only one of the possiblities. From what you've written, it sounds like they've only ever given you a visual diagnosis; and unless you've had swabs or blood to confirm, now would be a good time to do that.

 

Further, herpes and canker sores are very different things. Herpes do not cause canker sores. Herpes in the throat? Possible, but very rare. HSV1 can do that, HSV2 does not. And, if it is HSV1, well, about 80% of the population over 30 has it.

 

Now, Epstein Barr( Mono) can cause sores in the esophogus. That's another herpes virus. So can Cytomegalovirus...another of the herpes family. Those are equally as common.

 

You and your boyfriend should go get a full panel STI test, and see where you stand. Right now, I think you're letting the anxiety get the better of you.

[BreeBree92]

I have had a swab that came back negative, but my doctor said it sounded like they tested too early. I had an antibody test, but, it's going to come back positive anyhow because they swabbed for herpes in the back of my throat. And HSV can cause canker sores, which is what my doctor told me. Maybe she's wrong? But, either way. I have HSV 1 because I get cold sores. Swabs and blood tests for herpes are VERY often false results and are inaccurate, unfortunately :/

 

The bumps in the back of my throat also come in outbreaks, just like herpes. I've had a full panel and everything has come negative! And, my boyfriend was a virgin when we met. Sooo yeahhh... Doctors are pretty sure, unfortunately. :(

[WCSDancer2010]

@BreeBree92

 

First - I wrote this before I saw that you had been replying here on one of the duplicates, so sorry for anything that has been answered. But I WILL reply to your post above here first:

 

Regarding canker sores and Herpes... true canker sores are NOT caused by H. And I hate to tell you this but MANY MANY doctors are very poorly educated about H. I think the May clinic is a pretty good source for info:

 

http://www.mayoclinic.org/diseases-conditions/canker-sore/basics/causes/con-20021262

 

So - I for one would go to an Infectious Disease specialist and get to the bottom of the sores in the throat..(And the other area).. if they took swabs from your throat w/o blisters it's highly unlikely they will get an accurate result. And it's likely the Dr didn't get a good swab if the other area came up H- if you had blisters. If everything came back negative with a full panel (ie, you had bloodwork for H) then it's really really unlikely your sores in your throat are H. So get thee to a Dr who KNOWS about Herpes and is up to date... your Family Dr likely isn't and even some OBGYN's are not up to snuff with it, esp the oral/throat variety.

 

Sooo ... this is what I wrote originally :)

 

Awww honey... you got a rough shot, didn't you. First off, you need to BREATHE! You WILL be fine. Your man is standing by you and he likely feels REALLY bad about giving you H (assuming that's what it is)....

 

So here's what I see:

 

Did you ever get swabbed for the H in your throat? Or blood tested? I would want to have that checked out. H1 is usually only found on the outside of the lips and H2 is VERY VERY rare in the mouth ... as in, only 1% of all Oral Herpes is H2. (Sorry @Herry but H2 CAN cause Oral herpes in the throat, but again, it's VERY VERY rare) So if they diagnosed you by visual symptoms, it's not a firm diagnosis.

 

Canker sores are NOT herpes. Canker sores are caused by a whole lot of other things... Did they give you Valtrex for it? And if so how fast did it clear up? I mean, it's possible that is what it is but I would want a definitive diagnosis on that. Right now, without an OB there, you'd have to get blood work done. If you get it done now, whatever the result is will be what you have orally because your genital OB won't have been around long enough to have antibodies that would show up in the tests...

 

So - you say your BF said he has Canker sores too ... were they on the inside or outside of his mouth? Again, if they were external, yeah, that's H1 and you likely have it genitally . AND, over 50% of new genital cases are H1 because people don't know that it transfers to the south with oral sex. Again, you need to be tested ...did they swab the area? If so you should have the results by now. Blood tests will be useless for about 4 months if they didn't take a swab.

 

Now, with all this said, you need to calm down. Yes, you can transfer it to your eyes but you almost have to try because as long as you wash your hands after touching yourself down there you will kill any virus on your hands...and you've had the Oral H long enough to have antibodies to it so it's unlikely you will pass it on from there to any other area.

 

One thing we do know. Herpes LOOOVES stress.... so you need to calm down as much as you can. Stay on here and get informed and support from people who know where you are at. And know that you will get through this just fine. I'm 52 and I've had H2 since 17 and H1 oral on my lips since I was 3 (60% of young people have H1 oral by young adulthood from other kids and doting Aunties who kiss them with an OB). Life is just fine over here. I have 2 beautiful H- daughters and I had a good 20 yr marriage. Yes, dating can be awkward (tho I actually have disclosed on my profiles) but dating is just plain awkward, period.

 

And please, enough with "this awful disease". I know you may have a hard time accepting it right now but it really IS a nuisance skin condition in a really inconvenient place. A "really awful disease" is Cancer, or Parkinsons, or Alzheimers, or Chroans disease. As long as you use this kind of language, you will be a victim to the virus. The sooner you learn to use more accurate language like "this inconvenient disease", or "this crazy virus" the faster you will regain yourself and the anxiety will lessen as a result.

 

(((HUGS))) my friend. We're here for you.... come in as often as you need for advice and support :)

 

[BreeBree92]

I've been going crazy washing my hands, using non-latex gloves when I'm applying medications, using hand sanitizer every five seconds. Ugh. It's just so frustrating. And you're right, it's not the right terminology to be using, but that's just how I feel right now. I feel like I've been plagued with an incurable disease that has the ability to take away my self-confidence, my vision and my sanity. I'm going nuts. I'm super worried that my boyfriend and I are going to have issues in the future because of our long distance relationship and I won't be able to find anyone else because I never have been in the past. I had to go online to find a boyfriend, which to me, was one of the best things that could've happened, but it feels pathetic. Ugh.

 

And yeah, I'm almost positive the stuff in my throat was Herpes. I get the same thing on the inside of my lips and it was what my boyfriend had going on. I guess I've just been calling them canker sores, but, they're most likley HSV1.

 

It looked the exact same as what's going on down there right now. There have been a lot of visual diagnosis going on, but, there's also not much else that appears in that way with open lesions down there, though I did bring up the possibility of having a silicone allergy with my doc which she said may be possible if I don't have any more outbreaks.

 

But that's the thing, if I have HSV1 down there from the sore on his lip, the antibody test isn't going to distinguish between the HSV that I get in my mouth and the HSV that's down there unless there's two different types. So really, I have no accurate way of knowing unless they do another swab if I have another outbreak.

 

Right now, I'm taking cimetidine (a GERD med that's been shown to reduce outbreaks), acyclovir suppressive therapy, and L-lysine... I'd like this shit to go away and stay that way. lol

[WCSDancer2010]

Again, the stuff on the inside of your BF's lips is NOT Herpes. Now, he *may* have HSV1 orally and he *may* have been shedding asymptomatically, but Canker sores on the lips are not Herpes....go read the Mayo Clinic link. Now, your throat is a whole nuther matter. That *could* be HSV2. If your blood results come back H2+, well, as you said, it could be in either place. BTW, has your BF been blood tested? Because THAT may tell you more about what's going on..... you certainly need to get him tested too so you know what you are BOTH dealing with....and you both should get re-tested in 4 months, just to be sure if you come up H-.

 

Now, if you are using Cimetidine for GERD, and it actually clears up the canker sores, THAT may explain the stuff in your throat. Unfortunately taking it with acyclovir will mean you won't know which cleared it up ... but if the Dr gave you that GERD drug, to clear up the canker sores tells me they think it is more likely Helicobacter pylori, the same bacteria that cause peptic ulcers in the stomach .... and by keeping you from having any reflux you can knock the bacteria out of the mouth and thus clear up the ulcers.

 

Your very best bet is to get thee to a KNOWLEDGEABLE doctor ASAP for a swab. It's the only way you will know for sure what is going on......

 

 

(((HUGS)))

[BreeBree92]

No, my doctor prescribed the cimetidine because I told her about studies where it cleared herpes and reduced outbreaks, but also because I have gerd, not peptic ulcers. I had an endoscopy done to confirm that.

 

They swabbed my throat when I was 14 for herpes/ strep and they said it was herpes, but, I'm still pending the blood tests.

 

Also, my bf hasn't been tested because I'm the only person he's been with (supposedly) but I think it'd be good to get tested just in case I gave it to him.

 

I like my doctor and she's very knowledgable it's just she doesn't specialize in herpes, but I don't want to change. She said she's open to other possibilities if everything continues coming back negative.

 

Thank you for the support

[WCSDancer2010]

Gerd is reflux from the stomach ... which is where the bacteria resides.... and the canker sores would be an expression of that bacteria in the form of mouth ulcers. You wouldn't have to have peptic ulcers to have the canker sores from the bacteria ... it may just be that your body can control it in the stomach and not in the mouth.

 

I have had H for 35 yrs and not heard of the use of cimetidine for H but it *may* be that the cimetidine *appears* to work for oral HSV2 in the throat because people got a secondary bacterial infection/ulcer when the bacteria got into the H blisters. Certainly it won't effect the H virus directly because it is an anti-bacterial, not an anti-viral medication.

 

I would definitely get your BF tested just for safety. If he has HSV1 oral, then that *could* be why you have the genital OB from oral sex. But if that comes back negative then you may have just had it asymptomatically all this time. H is a sneaky little bastard and we often won't know the full truth of where we got it because of this ability to hide for long periods.

 

Keep us posted about your results. If you keep having confusing or unclear results you may want to get your Dr to contact Nurse Terri Warren at Westover Heights clinic in Washington.... she's one of the most knowledgeable people in the H world and given your Dr isn't a specialist in H, and you *may* have HSV2 oral, Nurse Terri could advise her the best way to try to determine for sure what is going on for you. You can google her and find the info on the web very easily ;)

 

(((HGS)))

[BreeBree92]

Thanks so much for all your advice, I really appreciate it. I'll keep you posted for sure.

 

Bree