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paranoidasalways

a little confused still need some answers

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paranoidasalways

alright i posted on here awhile ago and those who answered were very helpful. i had a blood test preformed, it is the igg type specific herpeselect test, which is the best test that one can get. it came back negative. BUT... i was told that i should wait three months after possible exposure before getting a blood test. i got tested a week before the full 3 months. are these results still valid? please any info and advice would be greatly appreciated. thank you.

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LostWeekend

This is a very good question. I have read and was told by my doctor that people can start to build antibodies as early as 4-6 weeks. However, most resources say wait 12-16 weeks before having the HerpeSelect Test. To me, even that seems like too large a range to suggest. (as you probably know, 4 extra weeks= a month= an eternity when you are waiting to find out about anything!) But, I feel like I am in the same boat as you since I was tested at just over 14 weeks and my results were negative and am, too, still paranoid. I don't know if that feeling ever goes away since there are also people who have never tested positive yet are certain they have the virus.

I researched the accuracy of the test and am now more confused than ever. In asking the experts (aka other members) for advice, best people can say is wait a few more weeks/months and get retested... No more waiting!!! :p

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paranoidasalways

you are absolutely right, the waiting is the almost unbearable. i've done a lot of research on the herpeselect® igg test. everywhere says that it is 95 to 98 percent accurate. that is amazingly good accuracy for any medical test period. so that puts my mind somewhat at ease. i'm going to go see my gp next week. i'll see what he says about the situation. if he thinks it's nothing, or something non-std related, then i probably won't get retested until i find someone and before we start dating. i really don't think that a few days could make a difference. but i'm not a doctor. hopefully my gp will know what to do.

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LostWeekend

Those percentages are pretty high. I think the test is definitely one of the most reliable. The thing with this virus in general is that everything seems to be so variable from person to person and, therefore, even the statistics don't offer me a ton of peace of mind. But I did come across something that was interesting... Said that at as soon as 3 weeks, 50% of people would test positive. 70% at 6 weeks. "Almost all" by 16 weeks. I am curious what your gp says, so keep me posted. Maybe someone else can shed some light for us in the meantime.

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RealisticGal

A study done at the University of Washington (<<<<linked there) showed that the median time for the Herpeselect test to detect antibodies was as follows:

  • 21 days for HSV2
  • 25 days for HSV1

However, many folks can take longer than that to form detectable antibodies. It all depends on the individual person's immune response.

Terri Warren, RN/ANP, who owns the Westover Heights Clinic, suggests testing at least 4 months from the last possible exposure in order to be sure.

There is one test which is considered the gold standard. It is the Western Blot. If you end up with uncertainty, that is the one used to confirm difficult cases.

Bottom line: if you want to be absolutely certain, test at the 4 to 6 month point.

Is there a reason you decided to be tested? Did someone tell you you had been exposed? Or did you have any symptoms?

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paranoidasalways

i've done some more research on the herpeselect test. there is about a 2-3% percent false negative possibility for hsv-2, and about the same percentage for false positive. those percentage are almost a guaranty to be accurate. anyway i was surfing other websites regarding these tests. there's one website that you can actually ask a doctor, for a small fee (of course), and he'll answer it in time. i stumbled across someone asking the doctor about some symptoms they were having and he said that he took the herpeselect test around 10 weeks after the last possible exposure and they came back negative. they asked if, even though it hadn't been the full 3 months, if the test was reliable after 10 weeks, and the doctor responded saying that the test after 10 weeks is completely reliable. so good news there! if a doctor online or otherwise who specializes and is an expert with std's says that this test is completely reliable even after 10 weeks then he's probably right. i'm not sure if i'm allowed to post the link but i will if it's okay. i've read other articles and posts here and there, and i think the main thing we are going through is stress and worry. the brain does crazy things. there was another person that said they were almost 100% percent sure they had it, due to some things happening down there, they were tested after 16 weeks and it came back negative. in their story they were driving and were pulled over by a cop and started getting a panicky feeling, and they noticed that their symptoms they had when they were worried about it returned when they were panicking. it was just nerves/worry/panic/stress/paranoia. sorry for the long reply. just thought i'd ease your mind a little, i know reading that made me feel a lot better. i'm going to try to get an appointment on tuesday, i'll fill you in on the details. let me know if you hear or read anything else. keep in touch.

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ScaryJimmy

My assumption has always been that if you test negative at 12 to 16 weeks AND show no worrisome symptoms then you are probably good. It could well be that the small percentage of people with delayed development of antibodies are showing clear symptoms (or even a positive swab).

Never really found the answer on this one.

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LostWeekend

"Worrisome symptoms" are the key with me. I have symptoms, but not the classic ones and, therefore, it's been even trickier trying to figure this out. If they went away after several trips to different doctors (with them telling me this is "definitely not herpes") I think I could let it go. But they persist without other explanations.

Paranoid, what's your situation? Have your few symptoms resolved? Did you ever get a reasonable explanation for them? If so, you definitely should let it go, at least for now. Worrying will only make things worse.

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paranoidasalways

my symptoms are actually very not typical herpes symptoms. but i always read those horror stories where someone thinks they have a rash or something and test negative, then 5 years later find out they have it. those just keep me paranoid. but i'm slowly and gradually letting the worry go. taking it a day at a time. what helped me a lot to begin letting the worry go is; taking a step back from the situation. thinking about myself with these symptoms as someone else, and objectively looking at the "symptoms" i have from someone else's point of view. when i write them down or google them all together it's hard to think of them as being std related. i'll do a quick overview of my symptoms and try to identify them in a category. hopefully this makes sense.

-penis/genital pain/ache around penis glans head (possibly herpes).

-penis/genital pain/ache around penis glans head- but has lasted

consistently for 12 weeks, and used a condom every time (very high probability that it's not herpes).

-no sores/blisters/cuts/discharge/puss or anything like that (not herpes)

-no pain during urination, ejaculation, or masturbation (not herpes)

-bladder/pelvic pain/pressure, (not usual herpes-very rare cases)

-stomach inflammation/pressure- constipation/diarrhea (very unlike herpes)

-some frequency of urination, and sometimes not being able to "go" as much as i think i should be "going" (not herpes)

-testicle pain (not herpes)

so once i broke it down and actually look at those symptoms, as well as getting a negative, i can almost safely say that it is not herpes. the research i've done leads me to believe that i possible have a fungal or yeast infection. prostatitis, bladder/urinary tract infection, or possibly kidney problems. i can kind of put my mind at ease, even though there's still pain/ache down there, because herpes does not last 12+ weeks consistently. depending on what my gp says i'll probably just let it go. especially if he just gives me some medication and i don't have any problems after that. i'll probably be seeing him thursday now and will keep everyone updated as i go along. keep posting any info that can help with this discussion or any other thoughts.

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LostWeekend

Just found this and thought it was a good article about testing:

Here is a quote from it that may be relevant to both of us:

"If the IgG test is negative, and at least six months have passed from time of possible infection, they should be told that they don’t have herpes. If less than 6 months has passed since possible infection, have them return at the appropriate time interval for retesting of IgG."

Here is a link to the site:

http://www.herpeselect.com/healthcare/counseling.pdf

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ScaryJimmy
Just found this and thought it was a good article about testing:

Here is a quote from it that may be relevant to both of us:

"If the IgG test is negative, and at least six months have passed from time of possible infection, they should be told that they don’t have herpes. If less than 6 months has passed since possible infection, have them return at the appropriate time interval for retesting of IgG."

Here is a link to the site:

http://www.herpeselect.com/healthcare/counseling.pdf

I am assuming that this is only the protocol in response to a positive IGM test, as I have consulted with Terri Warren and she has been consistent in saying 16 weeks for definitive results. As well, she mentioned that she has only seen 3 patients in 29 years who took 6 months to show antibodies.

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LostWeekend

ScaryJimmy-

That is interesting that Terri Warren said that. She is certainly an expert in the field and only 3 after 29 years is certainly a small number. So many things I have read say up to 6 months, but maybe that is just those doctors being sure they cover all their bases. (I know HIV testing says 6 months, too, so maybe that is just standard advice in accordance with that as well) I guess the only real need to keep testing is if you have unexplained symptoms or OBs. Most people I have read about who have had positives after 8, 10, 12 months are usually those that keep having OBs and are almost certain they are positive anyway. I am keeping my fingers crossed for paranoid. I think after his trip to the doc he will have a better idea what he has going on and if there is any further need to test.

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paranoidasalways

well i think i'm pretty much in the clear, i went out and bought a uti home test kit. i definitely tested positive for a uti lol. i took the azo one. they have a color key to tell if you're positive and how mad it is. i.e. the darker purple it is the worse your uti is, and mine was the darkest color on the strip. so good news and bad news. the strongly positive uti and the negative igg test, have lead me to believe i'm in the clear. bad news is i have a uti, never thought i'd be excited about that lol. i looked up the symptoms and cases, and most of them are spot on with my symptoms. i will be, hopefully, completely confident after i see my gp. the only thing i'm worried about now, is possible complications with having a uti, especially for possibly having one for 3 months. i'll keep posting the more i find out. thank you everyone for your help and support. it means a lot to me, that complete strangers are supportive. thank you thank you thank you.

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lookingforanswers123

A UTI that is good news becasue a UTI can be treated and cured.

Scary Jimmy I too have consulted with Terri and have read many of her postings on Medhelp. I asked her the specific questions about people she has seen who have never tested positive through serology who had symptoms and that was the 3 in 29 years. So those 3 cases never turned positive via serology but were positive through a culture.

I have to believe there are literally 10's of thousand if not hundreds of thousands of people who have herpes who will never test positive and do not have your traditional symptoms. If the test misses 1 out of 10 that is a lot in my mind. If you read Terri's responses these days even the WB is not 100%. She writes where they believe it is more accuratre than the ELISA for HSV1 but even that they are not sure of. There are many threads you will read where people have had positive cultures but their blood work does not show positive for years. This is the exception. When they say most will show on the antibody test they are accurate 90 + % is most but unfortunately it is not all. This is what has had me in limbo for 16 months.

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ScaryJimmy

Lookingforanswers: I'm not sure of the background to your limbo but here is the way I try look at it:

Terri Warren: 3 patients in 29 years (with positive swabs). Dr. Handsfield: nobody after 12 weeks. Dr. Hook: nobody after 12 weeks.

So you have to think what the likelihood that someone would:

a) not show traditional symptoms;

B) test negative via swab; AND

c) be one of the select few who doesn't show up on blood tests at 12-16 weeks.

Of course, this is not even factoring in the chance of transmission for any one encounter, and the chance that the partner in question actually had HSV.

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paranoidasalways

it is good news that it's a uti. since i've had no ob but pain it makes sense that it's bacteria or fungus. one of the doctor's on med help, i believe handsfield, was answering a question regarding herpes and uti's, and he stated that only around 3% of all uti cases are caused by herpes, that is a very tiny number considering just about everyone will get a uti sometime in their life. also, if the uti is caused by herpes that usually means that herpes is in the urethra, which would be extremely painful and noticeable and show up on a test. it makes a lot of sense that the pain or ache i'm feeling is do to bacteria or fungus and uti-not herpes. worrying about it when almost all things point to no, is unhealthy. i can't go through life thinking i have herpes when tests say i don't and my symptoms say i don't, if i do i will never live a healthy life. we can say that people have it even after negative cases but those are extremely rare cases. 3 people in 29 years if she saw 100 patients in one year (which is low for any doctor), that's possibly 2900 or more cases, with 3 people being different. that's .1% or less. not 1% but .1%. we can let it consume our lives but we really won't be able to live our lives to the fullest extent. i can take test after test after test, (all being negative), and still be worried that there is a tiny percentage of people that have it but will never know. when doctor's, especially specialists in this field, say not to worry and that it isn't herpes, then it isn't herpes. a few other things i probably should've mentioned before: my mom has hsv 1 and will occasionally get fever blisters and cold sores. i don't think she's ever kissed anyone in our immediate family during an ob. my dad doesn't get them, my brother doesn't get them, and i've never had one either. in the igg test i tested negative for both 1 and 2, si i should feel confident knowing that i've never had an ob, and the test proved it. another possible symptom, is a possible oarl thrush. i'm not sure if it's a thrush or not, but my tongue has a slight tenderness and pain to it. it feels like after you eat something that burns your tongue and for a few days it feels prickly or sort of hairy, i've had that for probably the same amount of time. so that also makes me feel better.

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ScaryJimmy

As you suggested, I am betting that Terri Warren has seen far, far more than 2900 cases. And, Dr. Handsfield (who admittedly, is a bit of a maverick) has said that he has never seen a person test positive after a 12 week negative in a clinic that has seen approximately HALF A MILLION patients during his time there.

I think it just takes time to believe your results. Or, maybe you have to keep looking at the odds of dying in an accident, being struck by lighting, etc. to put it into perspective.

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LostWeekend

You definitely have to solid resources there. And most of whatever research there is supports this as well. That's why I'm still with the belief that as long as your symptoms are gone or explainable by something else and you have tested negative after a sufficient amount of time (12-16 weeks), then you are probably pretty safe. As Looking for Answers pointed out, obviously, if symptoms return and you get a positive swab test, then that is more reliable than the blood test. I have come across a few of those stories in my searching on different health forums where someone continually tests negative via Igg test, but has had recurrent symptoms and tested positive via culture. I wish we knew how/why this happened so that we could get a better understanding on the whole testing thing in general. With the virus being tough enough to deal with, the testing confusion just makes it so much harder mentally! Of course you want to believe you are negative, but you also don't want to be naive.

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paranoidasalways

i have actually heard the swab test is only 75% accurate, but i think that could be due to the time frame (before the 12 weeks). i also have recently read that Dr. Handsfield was either one of the researchers involved behind the test, or helped develop it. I know he was involved somehow. anyway, if a doctor who knows the test forward and back (even though most doctors are egotistical and don't want to admit when they're wrong-this situation is a little different, and i'm sure that doctors in this field are more focused on making things better and not having a big ego), and states that the test result are reliable even after 10 weeks, then i think it's time to move on. scaryjimmy you kind of hit the nail on the head, we're more likely to get in a car wreck and die or possibly get struck by lightning (i don't know the percentage of likelihood), than for the results to be false. now that i've said that, i'll probably get struck by lightning while getting in a car wreck lol. it seems weird to me that during the 12 weeks of waiting i was constantly hoping and praying, very hard, that i wouldn't have it. and now that my results are in, even after taking one of the best tests out there with a very very low fail rate, i seem to keep looking at the "what if's" and the incredibly rare cases. i guess i have to calm my nerves and say that there is a reason they are called "rare". the realistics, involving tests, symptoms, specialists, etc.-tell me it's not it. if we constantly look at the unrealistic view points then we will never move on from being worried that we have herpes. if test after test, and studies after studies show that we are fine yet we still contemplate the small rare cases, then we will never move one. we will be paranoid for the rest of our lives. i'm guilty of being overly paranoid (it's in the name), but i have to use rational thinking and reasoning. if i don't i will be a slave to something that has been proven to not be there. i think the main thing that has us all spooked are those tiny percentages, but like i have stated earlier: we are spooked by a less than .1%. are we really going to let that small of a percentage decide the rest of our lives, always hiding in the back of our minds? my vote is no.

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paranoidasalways

well, i just got back from the doctor and i told him i took a test for herpes and he didn't suspect herpes with a negative result and in the time frame i took it, also after physical examination. he did, however suspect chlamydia. he asked questions concerning my uti and during my examination there was some discharge, which i had never noticed before. he preformed a culture and look at my urine sample to test for chlamydia as well as gonerrhea. he was leaning more towards chlamydia after my urine sample didn't show anything relating to gonarrhea. he gave me a shot and a prescription. i am relieved but i feel so gross and unclean. i'm relieved that i don't have herpes but i just feel dirty. i will get the full results soon to see if it is chlamydia and not just a standard uti. i dunno, i feel relieved but at the same time i feel dirty and ashamed. i know it will go away (my actual prescription is only 4 pills that i take all at once), but i feel stupid. the wasn't the outcome i was expecting after my first sexual encounter, but i guess everything will be better in time.

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cfm1991

I agree with everyone who says that, if the test came back negative, you should be pretty positive you don't have herpes. Why did you think you had it in the first place? What made you get tested?

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paranoidasalways

my story is long and complicated, so i'll try to make it short. i was seeing dating a girl for awhile and we had sex. i knew her ex had it but she said she had been tested and it was negative, and i believed her. after we had sex she went back to get tested again just to be on the safer side because of me- i'm always playing it safe. her test came back positive even though she has never had any signs of it. after she told me i got extremely worried, even though we used a condom every time i was still worried. i know that before we had sex that i couldn't have given her anything because i was a virgin. 10 days after the last time we had sex, i started to feel some discomfort down there. there wasn't and hasn't been any blisters, sores etc. nothing typical to herpes, but i was still freaking out. i've been looking up everything i can since november. all of her tests were igm tests so they weren't that accurate and i was hoping that she didn't have it in the first place. all of my discomforts have lasted since then. which had me relieved because herpes doesn't normally last longer than 10-20 days, rarely up to six weeks. but mine has been going on continuously since. i hated waiting but knew i had to, so around the 11-12 week mark i ordered the igg herpeselct type specific test. it came back negative. so i went to my gp and he suspected chlamydia. i got the tests results back yesterday and it was negative as well. i did have a uti, but i dunno what is going on down there. it still hurts and november has been gone for awhile so i don't really think it's any std. possibly a fungal/bacterial/yeast infection- at least i'm hoping as much. i'm going to go to my local health department in a week or so, because my gp spent 5 minutes if that in the room. i should trust all of the tests because of their accuracy and sensitivity. i just want to know what's going on. and i hope it isn't anything more serious. additional info: when they tested for chlam and gono they looked for hiv traces and there were none.

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ScaryJimmy

Paranoid: Do a google search on "chronic pelvic pain syndrome". It might explain your symptoms.

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paranoidasalways

i was actually thinking it was prostatitis all along, but i need advice from a doctor in person. and mine spends maybe 5 minutes in the room, so it's almost pointless to go to him about these things because he doesn't seem thorough. i think the thing tat worries me the most is none of this started until after i had sex. i know i shouldn't really question the tests because they are rarely ever wrong, but it just has me thinking that there has to be some connection from sex to my issues. i read some of an article online and it says there is a link between herpes and prostatitis, and that has me worried as well. but then there was a post by Dr. handsfield that said there wasn't a connection between prostatitis and herpes. just as confused as i ever was... any help would be great. thanks again guys. you're the best.

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RealisticGal

I'm wondering how well your screen name reflects your nature. It could be that your symptoms are a result of your fears. The mind is a mysterious thing. Symptoms truly can be manufactured by our psyches. When I first became intimate with my guy, I was sure I was feeling itching, tingling and swelling of my lips after giving him oral. I totally expected to see a lesion pop up on my lips at any moment. But nothing ever came of it. Is it possible you are feeling these pains because you expect to, since you had sex with a girl you believe has been exposed to HSV?

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