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Hi terri,
First, thank you for this great service. You have helped so many!! I’m so sorry my story is long but I will be as quick as possible!
So 13 weeks ago I had protected sex and unprotected oral. 2 days after the incident my vagina turned very red, raw and swollen. I had severe burning on the outside (all over) and constant discharge. I believed I could feel tingles and lower back pain. Had been sitting in public spa for seven days prior.
5 days later everyone of these symptoms persisted so I went to a doctor who said he saw irrigation but no herpes. 9 days later these symptoms were still constant and I had a chunk of flesh fall out my vagina. I went straight to er where they were puzzled what it was. They saw green discharge but no herpes. High bacteria but tric, gonorrhoea, chlaymidia all came back negative. Treated for gon, chlaymidia and tric after test (turned out not nessessay from negative results)and also gave me 7 day flagyl – helped a little.but first day of flagyl (day 12 my whole body started tingling!! The next night I was at the end of my period and had a pad – woke up and it was wedged, had developed a rash where it was, like inflamed follicles. Went straight to another std doctor who had been in the business 20 yrs- said not herpes. Day 14 went to yet another doc, who said no herpes just moderate bacteria. Day 15 the burning vagina had finally started settling. The’pad rash’ after 3 days was almost gone. But vag still red, raw and swollen. The next two weeks (one month after incident) the red raw swelling was still constant down there. Slight discharge. I believed I felt pinching and tingling in my lower body. 4 weeks 3 days after I decided to try monistat one- put depository it in at night and woke up to a small puss filled bubble near hole. By afternoon another two. (Max3mm insize) by night they were gone they were just 3tiny painless red pinhead sized dots. Like a mm. Went to std clinic next morning she said all looked normal! No signs herpes! Note- I could rub them and no pain. 3 days later they had not change size and we’re still painless. Maybe one mm. ‘Yeast’ finally went and vag starting to look somewhat normal agin. Not once has it hurt to pee.i developed about 20 red itchy scattered dots all over my body (feet to arms)and butt. Very itchy scalp also. The man who I had incident with went and got herpes test. Positive for hsv1 igg but hsv2neg. – never cold sore in his life.
5weeks after incident I developed a grey white ‘lesion’ right at the entrance next to vagina hole. No bubble or blister, just showed up (I had been inspecting vagina around 3 times per day since incident). It was there for two weeks and never changed. I could rub it without any pain whatsoever. Went to gynaecologist she said 99%sure not herpes-satellite yeast lesion. I flew back home (Australia) due to this ordeal. It happened in USA. Two week break since ‘ lesion’ and then tingling and itchy and again ‘lesion’ popped up in same spot., went to gynaecologist 2nd day it was there and again said 99%sure not herpes. He did swabs for hpv, herpes and few other things. All negative. Then went to a dermatologist said she’d worked in std clinic and that lesion not herpes. I had seen around 15 doctors in my six weeks in USA all said no herpes. I have spent all my savings trying to get to the bottom of this and no one can give me an answer. The lesion has showed up twice now in the 3 months and I also have what looks like a frost bitten vagina entrance. (the surrounding skin right outside the entrance) started two weeks after the sex and grew. Still there but yet all doctors tell me it’s normal when I know my body and to coincidental to pop up that quick. Have been pretty much tested by gynaecologist for nearly everything. So here’s my tests
4 weeks (roughly) igg herpes 1&2 negative, chlaymidia, gonnereah, hiv, trichamonis, negative
6 weeks igg and igm herpes 1&2 neg, chlaymidia, gonnereah, hiv, tric, hep b and c all negative. Swab hsvnegative.
8 weeks after-panick attack c-reactive protein1.7 , vagina biopsy of white flesh. Nothing except possible hpv.
8weeks, herpes igg 1&2 negative. Hiv negative. Hpv swab negative. The 2nd painless lesion was swabbed on day 2 for hsv. Negative.
10 weeks, herpes igg1&2 negative, hiv hep b and c, syphillis, gonnereah, chlaymidia all negative.
12 weeks herpes igm and igg 1&2 all negative, hiv, hep b and c.
So I’m Dailey getting these random tingles in my genitals and lower half of body. I get a very itchy clitorus and general itching all over my body also. So with all these herpes symptoms I truely believed I have it, yet in the last 3 months since it’s happened I’ve had well over 15 doctors who say I don’t, two swab tests, and numerous blood tests up to 12 weeks that say negative. Please terri what else could it be? Also I have been following your forum every single day and I see you have now stated igg test misses up to 25% percent. In 6-8 igg tests am I likely to be in that 25% because I’m having every symptom as stated. And i just want to get on with my life and go back to my darling ex husband and have a baby. I have had severe anxiety over this and seeing two diff physiologists now. Have also been prescribed mental anxiety tablets which I’m yet to start. I just don’t want to infect my ex husband or my future baby. Please tell me your expert opinion and if I can get the western blot in Australia? I think I must be in the 25% that isn’t getting picked up no matter what the docs are telling me what else could explain my symptoms. Please help terri -
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Sorry, I’ve been actually in Australia and have been traveling for the past day.
So you have lots of evidence that you don’t have HSV 2 so let’s take that off our plate, OK? He tests negative, you test negative, period.
so that leaves HSV 1 as a possibility and yes, the test for HSV 1 misses 25% of infections. The western blot is not done in Australia (just checked) but you have blood drawn, spun down and shipped here and we can process the western blot for you but HSV 1 genitally does not behave in this way . Herpes does not cause all over body itching and HSV 1 genital infection is not a frequently recurring or persistent genital presentation. If the biopsy suggested HPV then I think that is far more likely. There are also conditions that cause white areas in the genital skin but these are things you should discuss with your OB but I think if you had them, they would have told you by now.Terri
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Oh, maybe they do do the test! Tony Cunningham didn’t know of a place but if you found one, go for it! Give them the opportunity to do it before even thinking about flying to the US. You would not need to fly to the US anyway – if you can’t get the test done as you planned in Sydney, just have someone draw your blood, have it spun down and ship it to us. WAAAAY cheaper than flying here!
Terri
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well Dr. Cunningham is a big administrator there and maybe he really doesn’t know. I would go for it and see what happens. All we need is a marble top tube of blood, spun down and left in the tube, shipped to us. You could do the shipping, it’s easy. So if the lab there doesn’t work out, that’s all I need. It would be really expensive for us to ship you a kit honestly but we can if that’s what you want. I’m sure the lab has a tube.
Terri
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Yup, that’s it! You’ll have to let me know how it all goes! There is another person from Australia who is also looking for a place to do a western blot – I will let them know too!
Once a test misses an HSV 1 infection, it continues to miss it, in my experience.
Terri
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Yes, you absolutely can draw the conclusion that you don’t have herpes. I usually like 16 weeks from time of exposure as that is the UW recommendation but I honestly think if you were in the process of developing herpes antibody you would have at least an indeterminate result now if not a positive. And you are so close, if you were my patient, I would not recommend that you retest. In my mind, you are good to go. I would make every effort to ignore those genital tingles from time to time and also the random bump here or there.
Terri
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I think it is extremely unlikely that you would get herpes in this way. First of all, if you were tasting soup, it was likely hot and the heat may well have killed any virus that might have been on the spoon plus the soup likely diluted any virus that might have been there and we don’t even know that she was shedding virus the day before an outbreak. The odds of getting herpes in this situation are a million to one!
1. NO
2. extremely unlikely
3. No
4. So close to zero I can’t imagine anything closerTerri
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There are a few other conditions that can cause something like this – apthous ulcers of the labia, Bechet’s syndrom are a couple of things
Honestly, even though you have these symptoms, I don’t think you have herpes, no, I certainly do not. I trust the western blot for picking this up. And western blot is the same no matter where it is done. It is the name of a procedure, not a brand name of a test.
I think you should obtain some PCR swabs from one of these doctors and next time you get this, immediately swab it and take the PCR swab in to a lab in your area. If it is negative, you need to move on. How likely is it that all the professionals and all the lab tests are wrong and you are correct? I’m not saying it isn’t possible but I am saying the odds are very very strongly in favor of others being right and you being wrong. Do the PCR swabbing and let me know.
Terri
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