Can't get a diagnosis

[katie]

Well, its been 5 months of pure hell. I had my first primary oral outbreak (which I wasn't aware of) and received oral sex after my bf kissed me and guess what? I gave myself HSV1!!!!! Only problem is, I never get a sore....I have swabbed everything under the sun and can't get a positive test and even at 10 weeks post exposure negative! I went on Valtrex to see if symptoms would subside.....NOT!!!!!! Because I keep coming back negative, people think I am some crazy person that thinks she has a virus and doesn't. I am on antidepressants and have had to leave work. Suicidal thoughts have been spinning in my mind but I can't seem to do it....LOL...too scared of the pain of it. I am mad at myself b/c I gave myself this damn virus!!! How horrible is that!!!! Honestly....and not only that, I can't get a positive diagnosis and I broke up my relationship with my BF because I couldn't bare the thought of passing it to him and even though every dr has told me I don't have it, I know I do. I could have easily had sex with him....so many drs said I could...no problem...you don't have it....get on with your life. So where does that leave me? I have lost 20 pounds in 5 months....can't get out of bed. I am punishing myself for not knowing better....I should have known I was having my primary oral outbreak.....how could I be so careless!!!! And please nobody post that maybe I don't have it because I think I will totally lose it!!!! I know this sounds ridiculous, but I now get pimples all over my legs, bum and hands and breasts and face. They do not look like typical herpes sores and are not full of fluid. Anyway, I am not here to get a diagnosis. I know I have it.....my thoughts have suicide have subsided slightly......I just can't seem to move forward, I am stuck.....you see, my whole life I was petrified of this virus. Petrified of my kids getting it from toilet seats...never shared a drink or utensils with anyone. How the hell was I so unlucky to contract it! How is this so flukey! I know everyone says you deal with it....it gets better....how do you forgive yourself for getting it? How do you let yourself have sex with someone again? I am petrified of passing it especially since my experience was so painful!!!! Extreme vaginal, leg and anal pain...burning....but no damn sores! I am in therapy....have family that is helping me.....I don't know how I will forgive myself. I don't even know if I want to forgive myself. I should have known better!! Someone out there, please write back. I would never judge anyone for having herpes...would never feel they are less of a person but I can't seem to do that for myself. How do I stop punishing myself? How do I have sex again without being petrified?

[katie]

How does a germaphobe deal with having herpes orally and genitally?

[WCSDancer2010]

@Katie

 

First ... BREATHE my friend..

 

I am mad at myself b/c I gave myself this damn virus!!!

 

So here's the deal... yes... it sounds like you have HSV1 ... ORALLY. So any blood test will come up with antibodies for HSV1 ... but that doesn't mean you gave it to yourself genitally ... in fact, once you have the virus for over 4 months it's less likely you will get it in the other region anyway and damn near impossible to pass it via your BF. So I have to agree with the Dr's - you could not have given yourself HSV1 genitally.

 

How the hell was I so unlucky to contract it!

 

You are just like most of us who have HSV1 oral - you very likely got it from some doting Auntie or Granny who gave you a sloppy kiss during an OB before they knew that "coldsores" were a virus and that it could be classified as an STD. About 60% of young people have Oral HSV1 by the time they are young adults. I got it around Age 3 (I have the photos to prove it) and I don't know who my generous doaner was either.

 

I know this sounds ridiculous, but I now get pimples all over my legs, bum and hands and breasts and face.

 

Again, HIGHLY doubtful that this is Herpes. More likely a systemic bacterial infection or reaction to something in your environment/diet.

 

I had my first primary oral outbreak (which I wasn't aware of)

 

So did you have blisters or not? If you were not aware of it, how did you know you were having a Primary OB anyway?

 

I should have known I was having my primary oral outbreak.....how could I be so careless!!!!

 

Well, sadly we are not well educated about what to look for, so how can you blame yourself for this?

 

you see, my whole life I was petrified of this virus. Petrified of my kids getting it from toilet seats...never shared a drink or utensils with anyone.

 

Well, paranoia will make everything feel like you have something .... when in fact your fears about your kids "getting it from the toilet seat" are absolutely, totally unfounded. You have to have skins-to-skin contact to get this - the virus dies quickly when outside the body. And I raised 2 daughters and never worried about sharing a bathtub, toilet seat, or even towels and I was just cautious about sharing drinks ... if I had an OB I wouldn't share or kiss them during that time.... and they never got it from me.

 

How does a germaphobe deal with having herpes orally and genitally?

 

Get treatment for your phobia.... because THAT is what has you in this cycle of fear and paranoia about passing it on (not that it can't be passed, but you sound like you are hyper-reactive right now.

 

And did you get tested for things like Chlamydia, Yeast infection, vaginosis, etc? Because any of them could have given you the symptoms you are describing in your genital region.

 

How do I stop punishing myself? How do I have sex again without being petrified?

 

Get educated..... learn as much as you can. You need to understand that the Dr's are likely correct that you don't have genital herpes .... and I'm not sure that you have oral HSV1 either unless you had a real OB on your mouth (NOT the sores that you get IN your mouth ... those are canker sores)..... but certainly the odds are that you have H1 given the numbers of people who have it ....

 

AND, IF you have it, well, there are great anti-viral medications to protect a partner and condoms help ... to the point that you have a better chance of dying in a car accident than passing it on if you use both of them.

 

Life assumes risk ... sex assumes risk. So does driving, many sports, and many jobs. The trick is to reduce your risk factors and then LIVE LIFE to the fullest ;)

 

(((HUGS)))

 

[katie]

Hi. I had a swollen lip with 3 tiny pimples (mosquito bites) on the inner bottom lip. Damn dr didn't swab but gave me valtrex and antihistamine and said take both....symptoms subsided within 24 hours of taking meds. Still had numbness in tip of nose, tip of tongue, roof of mouth.....went away mostly....had oral sex 4 days later b/c symptoms had stopped then next day extremely tired swollen lymph nodes....felt like had mono!!!! I have such weird skin and abnormal reactions to things I didn't think much of it (the lip part). But then 14 days after the oral sex incident, had sex with my partner and experienced dysuria.....2 days later swollen vagina.....urine infection.....pain like vulvodynia continued for 3 weeks....but no sores! Had 2 drs appts to check and they all said 100% you don't have it....no sores! I have been experiencing for 5 months, pain and burning in vaginal and anal area and down legs which comes and goes. I never have a day without symptoms. However, the good thing is hte symptoms are a lot less now adn before they were at an excruciating 10....now they hover at 2 to 4. Much more tolerable. Anyway, I have been surfing net for 5 months and I know the risks of passing intellectually but emotionally I can't seem to get passed them. And say I am one of the 2% that passes.....how horrible would I feel to see someone in the pain that I experienced? Herpes is a frustrating virus to say the least. It is an emotional virus. I keep thinking that they will find a cure...it sounds so promising.....I can wait to have sex.....10 years! LOL!

[katie]

I have been tested for all other STDs twice...negative.....

 

Thanks for responding.

[WCSDancer2010]

on the inner bottom lip

 

That is not Herpes then ... Herpes does not occur on the inside of the lip. Have you been blood tested for HSV??? Assuming you are at lest 4 months post exposure from when YOU initially got it, if you have it the antibodies will show up in the test...you don't need to get a swab to get a result.

 

And say I am one of the 2% that passes.....how horrible would I feel to see someone in the pain that I experienced?

 

There are sooooo many things you could do to "harm" another that have a similar risk factor - including car accidents, general accidents, other diseases, etc. Would you feel terrible if you harmed a friend/lover in any way? Hell yes. But unless you enjoy living in a bubble you HAVE TO GET IT that LIVING LIFE ASSUMES RISK. Period.

 

I would suggest you get a blood test to determine if you have H. If you come up HSV1+ odds are it's oral and not genital ....

 

As for the symptoms, I am guessing you have something else entirely going on... a different virus (there are TONS out there ... and have you been tested for things like Lyme???) or a reaction to food/environmental factors.

 

I would also check out JohnB and his string of discussions - you both sound like you have similar symptoms and both of you are very likely H- and dealing with something else ... here's one of his discussions:

 

http://herpeslife.com/herpes-forum/discussion/3241/pudendal-nerve-painphn-caused-by-herpes

 

(((HUGS)))

[katie]

Thank you....I read the thread.....I did get a blood test at 10 weeks post exposure and it was negative. Since I have been on antivirals for 2 months with it doing absolutely nothing.....I will retest in a few months. I still really feel this is herpes, but I am open to drs testing for other things. The only suggestion they have is stress which I realize I have but people who are stressed can also have herpes or other diseases. I asked to see a nerve specialist but dr won't do so unless I have been on antidepressants for 3 months! That's ridiculous! I am running out of drs to see. I was able to get referral to dermatologist for them to look at pictures of the pimples and stuff going on with fingers, legs, buttocks, face, chest, arms....sometimes just one pimple and never in clusters and never with fluid. But they pop up intermittently some stay for 2 days some appear and disappear within the hour and some stay for 3 weeks. Its so strange! I am tired I would say is an understatement and feel defeated and wish I had a money bet going with someone so at least I could get rich from this whole experience LOL. Anyway, I have very supportive people around me. I am still at a loss for ending my relationship (reasons unbeknownst to my partner).....I came up with some excuse as he is in a serious relationship and we were casual....I couldn't imagine infecting 2 people with this thing in one swoop.....even though I have done above and beyond what a normal person could do to determine if I had some sort of STD. I felt guilty, not really about passing to him....I did all I could to determine what I had/have...but if he got it and gave it to his partner would devastate me. Anyway, unsure where to turn...you gave some good ideas...many thanks. I fear that no dr will take me serious now and I am left to deal with all these symptoms with no meds to help and no sex either until I figure this out which is really hard.....(just hit my sexual peak 6 months ago) REAL DOWNER!

[WCSDancer2010]

Since I have been on antivirals for 2 months with it doing absolutely nothing.

 

That and the negative blood tests has me thinking you are dealing with something else. Why don't you TRY the antidepressants and see if they help??? Pain IS part of the depression cycle ;) Can't hurt to try at this point .....

[katie]

Yes, I am on antidepressants....been 3 weeks....no change in physical symptoms....but it as helped my depression a bit.....will wait a bit more. I know this is HSV1....and its manifesting really weird in me....don't know why....maybe b/c I got oral and genital at the same time. Either way, stuck til I can get a positive blood test or sthng to swab. In limbo for a few more months I am afraid. Thank you for your advice....feeling defeated.

[HerryTheHerp]

Katie, I've read through the thread, and read the symptoms you are experiencing. I'm gonna be bold here and say "GET OFF GOOGLE!"

 

I can tell; been there, done that, and well, you're spending way too much time trying to diagnose what's going on. That's bad mojo and it's messin' with your mind. It's messin with your relationships. It's messin' with your life.

 

Go get a full panel STD test. Seriously. I dare you to go this week. I'm going to bet you that it will return a confirmed, negative result for both HSV1 and HSV2 as well as everything else. Your symptoms and concerns simply don't indicate herpes. What they do indicate is another disease, one I also suffer from on occasion. It's a nasty li'l bastard and it's far worse than herpes; it's called Hypochondria and it can cause your body to do some really weird things. I agree with Dancer, you should seek counseling for it, and like I said "GET OFF GOOGLE!"

 

You're not going to get a positive test. I guarantee it. And, if you do, and you provide me with a positive test result I can look at, I'll throw on a Tutu, turn on the webcam, and post a video of me singing "I'm a little Teapot" for the world to see. That's how confident I am you don't have herpes.

[WCSDancer2010]

Not that I would want @katie to have a positive result, but I want to see that ^^^^ .... LOL

[katie]

OMG....you are sooo funny! I would luv to see that. But I definitely hope I am wrong. And I don't deny I am a hypochondriac and have anxiety about illnesses......I have done a full panel STD twice.....negative.....I will let you know my blood results when I test in a couple of months. I really hope you mean what you said about the video cam!!! Soo funny...when I was like 4, I sang I'm a little teapot at my first singing recital....LOL...how'd you know? I am on antidepressants and seeking councilling. So I'm covered...no worries....Wondering how long you would need to be off antivirals to have an accurate blood result?

[katie]

And whether I have herpes or not...I believe I have it....LOL....and I just wanted to take the opportunity to thank those that have responded to my posts and the people that contribute to making this website a valuable resource for those of us going through what I would call a very traumatic time. Thank you for the support!

[chrymar]

it is so frustrating trying to get clear diagnosis! i too have had major issues and have non stop symptoms for almost four months now. keep your head up...you are not alone!

 

[katie]

OMG really?! I am going into my 6th month and I just feel so defeated. I know this sounds crazy, but it has spread all over my body. I feel that creeping, numb, pain feeling and it circulates to different body parts, then itching, then comes pimples....never blisters. I am so scared that it is going to go into my spine. I so thank you for your post....why do some people get symptoms and they go away and others get it non stop?

[katie]

Anyway, not going to post anything about symptoms anymore....just results and asking for support. I don't want to be part of fear mongering (SP?). I just need to know if there's someone out there with the same things going on. THanks to chrymar for your similar story. Hope we find answers soon and those answers are herpes negative and a diagnosis of something else.

[katie]

Well, I think I have finally had enough! Had another episode while sleeping with nerve pain in my head/neck/back. I think I will head to the hospital today and see what they say. I have been off Valtrex for a week and noticed the burning started to come back in genitals. Whether this is herpes or not, I am not imagining it and I am not manifesting it.

[katie]

Didn't go to hospital...slept all day instead. I am going to ask to see a nerve specialist. Love to all.

[WCSDancer2010]

Good luck - I'm sure it's very frustrating ...ANY answer is better than being in the dark and in pain ..

 

 

(((HUGS)))