All the symptoms but no pos tests, convinced I have herpes, worried I passed it to my 6 year old

[2Legit2Quit]

You should order the western blot to find out what is going on. She still cannot diagnose w out tests, but there could possibly be a chance it's a false negative, but not sure how likely that is. Order it from the Westover Heights.

[AJ2015]

Ok will do

[WCSDancer2010]

Western Blot info....

 

Westover Heights Clinic,http://westoverheights.com/ (503) 226-6678 ... they can order the test for you through Quest Labs. I think it's $250 for the test...

 

It costs $5/minute for a consult … cheap IMO for clarity and/or peace of mind. They are the premier medical experts on Herpes so I'd follow what they suggest...

 

 

[whitedaisies]

I always tested negative with the Elisa blood test. Apparently it can be wrong in approximately 10 percent of cases with false negatives. If you want no doubt, do the western blot. Mine came up positive after 3 negative Elisa tests.

 

Good luck

[whitedaisies]

I always tested negative with the Elisa blood test. Apparently it can be wrong in approximately 10 percent of cases with false negatives. If you want no doubt, do the western blot. Mine came up positive after 3 negative Elisa tests.

 

Good luck

[AJ2015]

The elisa test is that the igg test? But yes the percentage of false negatives is actually scary means even more people probably have it too. Checking western blot now.

[AJ2015]

not sure if you ladies will see this update. I took the Western Blot and it came back indeterminate for both hsv1 and 2.

[whitedaisies]

Did u take it from westover heights? What did Terri warren say?

 

Sometimes they say if u get an indeterminate after a year and then retest again and get another indeterminate it means u r negative.

 

What was the explanation they gave u?

 

Wow indeterminate for both viruses. Sometimes there is a similar protein in UR blood that doesn't mean u have herpes but it is similar to one of the proteins in the herpes virus. Seems weird to be indeterminate for both.

[AJ2015]

Yep she actually asked me a couple questions and finds that after 2 years of potential exposure it's beyond odd. She said send my partner to get tested if his is positive it means that it hasn't converted in my blood from negative to positive yet which happens in 1% after 12 month following exposure. And that if he's negative then so am I. But yes that was Terri.

[whitedaisies]

Interesting....will your partner test?

 

Also what does she say about UR bumps and pimples w white heads and your swabs being negative? Also you say you seem to have synptoms all over....what does she say about that?

 

I have had similar issues. Always swabbed negative. I always tested negative w Elisa and did western blot positive but I never showed negative to positive bc my Elisa is always negative even after a positive western blot.

 

We have very similar stories. I believe I have oral and genitsl hsv1. My hsv2 is negative via western blot.

 

I do wish u well. Hugs.

[whitedaisies]

Please continue to post...:this really helps me.

[AJ2015]

He has no other choice so yes. Well I have genital ulcers nothing puss filled no bumps straight raw patches of skin which combined with my other problems she says doesn't sound like herpes. I described the ulcers she said strange. Now, The little sores aren't fluid filled either just very itchy all over my legs bikini area down to my knees. What for me mostly indicates herpes is the neuropathic aspect. Cold sensations down my back buttocks legs, burning, itchy tingling skin all over and electric shock type sensations. Aligns with pudendal neuralgia which can be caused by the virus. Along with weird joint and muscle aches. I have a long list of symptoms who knows if they are related or not. So in other words you were never officially diagnosed with genital herpes?? That's what that sounds like. Negative swabs and you came up positive per WB for hsv1? Which of course can be genital but it also isn't confirmed. Dang. I'm on an autoimmune disease forum and if I told them that they would all have new worries lol. Because all these people with similar issues have been ruled out for genital herpes and most haven't taken a WB but several Elisa. I just don't get why for some of us it's so hard to figure out. My hope is that the testing evolves not just the "cures" this is ridiculous

[AJ2015]

About my negative results she said that after 2 years having elisa tests miss hsv2 is slim to none but that it misses hsv1 quite often. She does say that the testing is rather accurate I think she was as baffled as I am.

[whitedaisies]

I agree. I think hsv2 is nil. You may have hsv1 which is a small possibility.

 

You are lucky your partner will test. Mine was less than supportive.

 

I thought in this thread u said u had pimples w white pus.

 

I have no definitive diagnosis yet but I have a feeling all caused by hsv1 so I am very curious to hear your final diagnosis. Please post.

 

I have swabbed 30 times. All negative. Some stuff has since come up and emotionally I just can't manage to Swab anymore.

 

 

[AJ2015]

I've never had anything pus filled on my genitals no. I don't see why someone wouldn't test unless they know they have something. Girl ur not giving me much hope lol because even if he is positive for hsv1 that doesn't mean it's genital. Ughhhhhhhh... this is demoralizing like I've gotten to the point where I don't even care if I have it. I just want to know for proper management and behavior. Hugs girl!

[whitedaisies]

Exactly. Hsv1 is a mind fuck. He didn't want to know what he had and didn't want it on his medical records for personal reasons. He didn't care enuff for me to give me any clarity. Some people just don't want to deal or can't and it's very unfortunate.

 

But have hope. There may be clarity.

 

[whitedaisies]

I just tell my partners I have it. I live like I have it and it's very difficult bc there is no clarity. And now to the point after two years even if I get clarity, living two years like this has already done damage physically and emotionally.

 

I hope in your case you can move on from this. I wish you the best.

[AJ2015]

Is the damage from lack of clarity or the idea of it being herpes? Have u seen a specialist a gyn dermatologist somebody to look at your skin. 30 swabs? That's insane it really could be something else.

[whitedaisies]

I have seen many specialists with no explanation.

 

Recently I have found I am anemic so we are trying to get that better so maybe it will decrease some symptoms

 

Lack of clarity and the pursuit of diagnosis is exhausting. Also all these symptoms are crazy making. I have a lot of other issues going on besides h.

 

I have educated myself that having hsv wouldn't bother me if my symptoms were so much less. But again I can't prove anything.

 

I think a lot of it too disclosure is weird. I have it I dont. The guy either thinks I have it or I am crazy thinking I have it bc of all my negatives. Either way I don't look too favourable. Plus hsv1 genitsl people don't understand and are confused about.

 

I just disclosed and the guy said u can't get hsv1 doen there. That's hsv2. I explained I said I have negative swabs but positive for hsv1 via blood and I may have it orally and genitally. I just never know how to proceed bc I don't know if he fully understands risks and I don't even know what my risks are practically. And the guilt of going through with it and then them getting it is hard too. I just feel like I am no win.

 

Ugh. Well I vented. Thanks. Rough week for me this week. I wish you so much luck. Hugs

 

[AJ2015]

Oh how I understand what ur dealing with. Like I told u the list of crazy symptoms is far too long for me, well beyond the vaginal discomfort. My partner thinks I'm a complete lunatic seeing the tests have always come back negative. Like u said I think it's the search for answers that is more exhausting than anything because once u have a clear diagnosis u can move on to treatments by trial and error. I promise to keep u posted! Things will however get better, they always do.

[whitedaisies]

Wonderful to have connected with you. This process is so isolating. At least you have a partner even though he thinks u r crazy. It's nice to have support of any kind. I have been going through this process alone combined with a whole bunch of emotional stuff and it's trying.

 

Thank you. Feel free to message me. I wish u all the best.

[AJ2015]

How do I message you? I'd love to

[whitedaisies]

Go to your inbox. Compose a new message using my name whitedaisies.

[whitedaisies]

I sent u a message

[TreeHugger44]

I know this thread is older but did either of you ever get any answers or relief? I am dealing with the same symptoms for 3 years plus bumps that seem exactly like HSV but all negative tests. Very frequent. I am a nurse so I know it’s not all in my head or just normal stuff.  Thanks for this thread, it was good to know I am not alone