Ridiculous update - what now?

[whitedaisies]

So I went to the infectious disease specialist today who basically said everyone has hsv1 and that I do not have herpes on my genitals and he is going to do everything he can to prove it. He highly doubts the bumps are contagious at all but doesn't know why they keep coming. He says everything I am saying proves that my case is so rare....why would I be that rare person....and I said, why wouldn't I be?

 

He basically did some blood work....going back in a month and I was told not to worry about having sex and they said if everyone was like me there would be no STDs LOL! They said another virus could cause my vaginal symptoms and since I get no sores and never swab positive, it can't be herpes....OK I said, prove it to me! So that's where I am.

 

Now what? Do I have it? Do I not? I can't even convince an infectious disease specialist.....WTF? I can't be smarter than him....can I? LOL

 

I am so sick of trying to convince people I have it and I feel like giving up. Met a friend after and got some nice kisses to make me feel like a woman again since my legs have been spread eagle for medical purposes only lately!!!!

 

I still haven't had sex since March and slowly going crazy.....didn't disclose to my friend although he knows I haven't been feeling well and trying to figure it out...going to specialists etc...we only did some light petting...but hell...I am human! If an infectious disease specialist at one of the top hospitals says I don't have it then what am I supposed to do? Keep denying myself forever? Disclosing what? That everyone thinks I don't have it and even a top doctor specialist no less is convinced I don't!!! RIDICULOUS!

 

I am still coming to h opp as i did test positive for hsv(1) via blood so I have herpes wherever that little bugger is hiding.

 

Anyone?!?!

[whitedaisies]

I don't know what to feel anymore....I am soooo confused. I don't know what to tell potential partners, I want to have sex...I am going crazy....I can't handle the responsibility of transmission, but transmission of what? I've got to have the stupidest story there is!

 

:(

[Scared4this]

Hey girl, in the same boat and just made an appt with neuro bc my damn left leg burning has now turned more into numb feeling. All these very strange symptoms but no outbreak whatsoever... Checked in and out by doctors. My ID doc who is also my primary doc told me the same.... She infect hates the herpesselect test bc she is a firm believer that without lesions or sores... U May or may not have herpes. She told me in her many years of practice (NYC) she seem the blood test pos and neg ... So she never rely on diagnosing anyone without swab to prove. I think the infectious doc don't really view herpes as a real disease perse. But she such a sweet person and I been with her for at least 10 years. U want to talk about rare... I was diagnosed with a autoimmune related condition when I was 27 ... Only 1 in a million get it but the good news it just goes away on its own. I am one of those rare but lucky individuals since at that time my lymph nodes on my neck was swollen so big (size of quarter) and I felt like I had flu for like 3 months. So with biopsy (thank God) it wasn't cancer!

Anyways, I really think white daisies, u should stop convincing yourself that u have hsv1 in the gential area. You have more evidence of NOT having it than u do. I know all these freaking burning, pain, or whatever in the leg and vagina feels otherwise but you have to believe in the doctor or the evidences ( none of your swab have ever been positive). I mean, I take that as really good signs:).

I just want to give u a diff perspective that's all.... And trust me, I am no less paranoid as you ( running to doctors every chance I get bc I think I am having an outbreak). I have to keep asking them... Ru sure u don't see anything? They look at me like..." Do you want me to see something" type of look.

Anyways, I am sitting at my desk with my leg burning/ numb ... And think to myself, this whole thing is just crazy. But we are doing the responsible thing to seek the cause but I think we should be open minded to not always think it's herpes thou.

Anyways, I am going to get acupuncture on Friday as I read it can provide some relief.

We'll figure this out one way or the other:).

god bless, S

[whitedaisies]

Yeah, but how long do you stop your life until there is no uncertainty? I may never know...and then what? I can't stop having sex...it's already been 5 months and I know it doesn't seem long, but I am at my long awaited sexual peek and it's torture....I feel like a damn teenage boy!!!

 

Anyway, so confused...so tired...

[kaybee]

Did you ever get an actual sore swabbed? Or do you suspect you have h from nerve pain/other symptoms alone?

[whitedaisies]

Never had a sore that looked like herpes. Had pimples down below that have been swabbe and always came back negative. Swabbe baginal discharge - negative, swabbed red looking area on vulva - negative , swabbed area that looked irritated from friction but no reason to have friction- negative.

 

Have bumps on thighs and other parts no fluid can't be swabbed but nobody thinks it's herpes related.

 

Nerve pain tiredness and itchiness.

 

 

[whitedaisies]

Negative blood test thru public health non specific type test negative at 10 weeks and 6 months.

 

Positive blood for hsv1 at 8 months different lab and different test. It is type specific.

 

Docs are saying could have had false negatives or false positive. Blood test done at different labs. Blah blah. Everyone has hsv1 anyway and without a positive swab I may neer know.

 

Stuck!

[Scared4this]

Good question.... As for me, once WB comes back, I will at least know where I stand. If I were u, seriously I would just think positive that my hsv1 is oral bc u have no other evidence to proof otherwise. And if u want to disclose to ur new partner and just tell him, u were tested and hsv1 but never had any outbreak. Use condoms and move on :).

From reading on medhelp from the doctors and Terri, hsv1 in genial it's very rarely sheds so I really don't think u have much to worry about.

I hope u don't have hsv1 gential but I am not a doctor but if all the doctors are telling u and the ID doc is willing to proof to you... Your chances are pretty awesome of NOT having it.

I just have rather have positive thinking until I am fully sure. Then will deal as it comes.

Look at it this way, we are DAMN lucky to not go thru the painful outbreak others had even if you have it in ur gential. So go have lots of sex and be very safe! The lesson I learned from all this is, get ur partner to test stds with u and you never know, he might be hsv1 positive already! If so, what's there to worry at all!

Like they say... Life goes on and we have to somehow move pass this pos or neg!

Life is all about uncertainties .... U do the best u can and that's all u can do :).

God bless and here to support each other :).

 

[WCSDancer2010]

Well, the good thing is that if this Dr is THAT positive that you just have Oral Herpes, then hopefully they WILL get to the bottom of what it IS.

 

What I would do at this point is that if you want to be intimate, tell the person you've had these weird symptoms, you have been tested out the wazoo, and that everyone is telling you you don't have Genital herpes... and if it IS GHSV1, it sheds very little, you *could* take antivirals to be safe until you know for sure and you DEFINITELY will use a condom anyway ... and that their risk with GHSV1 with condom will be less than 1% ... IF you have it. BUT, in the early stages ... act like you DO have H and let it make you take things more slowly so you get to know the person before you tell them your story ;)

 

got some nice kisses to make me feel like a woman again since my legs have been spread eagle for medical purposes only lately!!!!

 

OMG I am so glad I was not drinking when I read that or my screen would be a mess.... Hahahahahahahahahaa!!!

 

@Scared4this

 

herpesselect test bc she is a firm believer that without lesions or sores... U May or may not have herpes.

 

Tell that to the people on here who got it from someone who had NO idea they had it until the person here had a full on OB .... so she's telling people that come back H+ on the test that they are OK????? SMH :(

[whitedaisies]

It's not like I want to go out and have sex with anyone u know? I jut want to know I am not going to transmit to someone I care about. I am not the type that can do one night stands etc. at least I don't think I am lol never tried. But I want to know that I can have it if I want it.

 

I am sore after my rendezvous even though there was no genital penetration (hint) and I am just becoming the exact person that they said I was. And it's the system that turned me into this mess.

 

Dancer what would u do? How long do I wait?

[whitedaisies]

And I am now paranoid again bc he fingered me then touched his genitals. When do I start believing everyone? When do I stop being petrified for people to touch me?

 

What do I say to this guy if he gets it?

 

Do I stop having sex forever bc I can't handle the uncertainty? This is soooo unfair. I know here are definitely worse things but COME ON!!!!

[myfiercecalm]

Wanted to chime in from a male perspective here. If the guy really likes you, and it sounds like you wouldnt be with a one night stand anyway, you can definitely tell him what you know right now and he will likely be totally fine with it. Hell it sounds like you probably dont even have it genitally. Perhaps what is happening there is some type of allergy. I dont think you need to put off your sex life at all. Hope that helps put your mind at ease :)

[whitedaisies]

Thanks. I appreciate a male perspective. The story just sounds so ludicrous and my situation is quite complicated and that's bc I made it that way.

 

Anyway.....sigh

[WCSDancer2010]

Again go back and look at how I suggested you could tell him about what's going on ... that you have been told by 3 (or however many it is now) that you don't have hsv genitally ... but something is going on so you definitely need to use condoms even once you get his results until you are given an explanation for your symptoms...

 

At some point we have to go with what we are being told, at least until we are told otherwise. There are a lot of things that could cause nerve pain so hopefully they will get to the bottom of it soon.

[whitedaisies]

Thx. Had a fight w my parents. Feeling down

 

They told me not to kiss anyone on the cheek at h opp bc I could get herpes. I am just feeling so alone.

[whitedaisies]

My only support is my therapist. Wtf? And she said if I wasn't her patient we would be besties.

 

If a therapist who knows all my flaws and bullshit and is a practicing Buddhist which means she has perspective sees that in me why can no one else?

[WCSDancer2010]

They don't know what they are talking about... don't let them get you down. You can't let ignorance get to you.... ;)

 

(((HUGS)))

[whitedaisies]

Double sigh. And I won't even mention what my dad said about my sexual abuse.....really hurtful.

No wonder I am looking for affection.

[whitedaisies]

Growing up we were called by others the white Cosby family. Now I am realizing it was all smoke and mirrors

[whitedaisies]

Ok.... Hint....really need someone to say some nice things about me bc apparently...

 

I am a sexual deviant, a home wrecker, have bad judgement, am so infectious can't be in the same room as my family, crazy bc I think I have herpes, in a marriage that is unfulfilling, had a lover that loved me but couldn't say it, have no authentic friends, kids hate me bc I am not feeling well.....

 

Anyone?

[WCSDancer2010]

Sounds like you may need to distance yourself from them until you are strong enough to stand up to them and let them know that you won't take THEIR abuse.... sadly just because someone is family doesn't mean they know compassion and unconditional love :(

[whitedaisies]

I do stand up to them and they just get mad and say I am selfish and I am not the girl try thought I was. I have changed.

 

But truthfully I was never me. I am more me now than ever

[Scared4this]

Maybe this whole lesson of all this is self love.... If we can love ourselves wholeheartedly with all the flaws, we won't give 2 shits what anyone says.

I know I wanted to be love so desperately and maybe that is why I am in this position I am in. If I loved myself a bit more I wouldn't have taken the chances I did. But all water under the bridge at this point.

Anyways, positive thinking no matter what is my motto today. I rather have hope than not at this point.... And at the end of the day, it all comes down to love.... Love yourself, accept yourself and allowing others to love you!

Chin up as u have people here who cares and will hold ur hands!

[WCSDancer2010]

Once you learn to love YOURSELF, nothing they say will be able to shake you. You have to learn how to not get drawn into THEIR drama and BS ... because that just feeds into it if you get defensive.

 

(((HUGS)))

 

[myfiercecalm]

We care about you daisies. Your family loves you too, but they just aren't very good at expressing it. They have no perspective for what you are going through. Unfortunately, they don't seem to realize they are only driving you away from them. I hope in time you can forgive one another. HSV is not worth loosing family relations. And like your doctor friend, I am not convinced you really have it. I plan to get tested again once 6 months pass from my last possible exposure in April. Perhaps we will both have good news by then :)