September 10, 2015 at 9:08 pm #9328
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
September 16, 2015 at 7:03 pm #9443
Sorry I’m abit embarrassed when I saw how long my message was! I am happy to pay extra or count this one message as the three. I’m just wondering if you’ve had a chance to look at it please?
September 17, 2015 at 4:45 pm #9455
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.
September 17, 2015 at 5:04 pm #9457
Thanks terri, I just so grateful for your advice.
That’s strange, I have been organising the last week to fly over to Westmead hospital in Sydney – the lab there confined 3 times to me they do the HSV western blot. I have an appointment with DOctor Donald Packam. So this isn’t correct about the western blot?
And how do I go about organising the blood shipped over then?
Many thanks terri and hope it’s nice and sunny here for you 🙂
September 17, 2015 at 10:33 pm #9465
Sorry to bother you again, but I’ve just been looking up flights from Australia to your clinic so I can get tested. hpw far out in advance do I have to book? I was hoping to come mid October. And if I come for one week will that be long enough to get the results? I’m desperate and will do anything to get an answer. Sorry for been a pain
September 18, 2015 at 8:03 am #9468
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!
September 18, 2015 at 1:34 pm #9503
Thanks terri. As you would know doctor Cunningham works at that hospital they said to me does the western blot so much there’s been a miscommunication between me and them 🙁 I would love to have the blood shipped there but I rang three different pathology labs yesterday and went to doctor and all they could tell me was they don’t know what that test is and how I go about sending it. One pathologist said I’d need to get a kit sent over with the tube and instructions from your clinic- then I’d have to send the blood back myself!! I was in tears because no one could help me they basically said all they can do is draw the blood the organising and sending off is up to me. How long does it take at your clinic for the results to come through? Thanks terri
September 18, 2015 at 1:40 pm #9504
Oh and if I’ve had about 7igg hsv tests and two igm- if it misses 25% I see on other posts on here that if your likely to miss once you probably continue to miss. So if I am in the 25% is it likely that not one of these tests would’ve shown up a positive? The last one was done at 12 weeks one day
September 18, 2015 at 1:41 pm #9505
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.
September 18, 2015 at 4:43 pm #9527
This is the test at Westmead I’m hoping it’s the same one you do.
September 18, 2015 at 5:26 pm #9531
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.
October 9, 2015 at 11:36 am #9976
Hi Terri, just wanted your opinion please- given what I stated in my first message along with the symptoms.. Having about 15 visuals and all stating no herpes . 2 swabs. About ten igg tests and I finally just got my western blot results back which were taken at 14 weeks 3 days both types negative (yippee ) can I draw a conclusion that I don’t have herpes? Was this enough time for the western blot ? I did have vagina irritation and on and off tingles since. Also had one painless lesion pop up twice since incident and gynocologist and dermatologist (who had worked in Std clinic both said 99% sure it wasn’t herpes and the swab on day two negative. I convinced myself I had it and it has been a very long 15 weeks. Given the western blot result can I conclude that I don’t have herpes? Please your opinion is very valuable. Many thanks 🙂
October 11, 2015 at 11:13 am #9998
October 13, 2015 at 11:38 am #10054
Hi terri, I have renewed my susciption Can I please get an answer for the post above yours, thanks 🙂
October 15, 2015 at 6:58 am #10074
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.
October 16, 2015 at 1:50 am #10094
Thank you for the response. Well I have had a relapse. I got my western blot results 2ish weeks ago and was so happy and closed that door (even though I had every symptom under the sun) But I feel this is unbelievable because I had about 3 days peace and then my sister in law was cooking soup… She asked me to try it, she had a mouthful off a spoon and then re dipped it and gave me a mouthful off the same spoon. Low and behold about 12 hours later she woke up to a cold sore. Arrrrg my heart sank and I immediately started panicking. I waited and waited then about 7 days later I felt tingling on my lip and the following day a crack popped up- it wasn’t going in the crease of the lip but ACCROSS!!! It was about 5 mm long. I went to the derm on day 3 and she looked at it under a microscope and told me 99.99 %sure not herpes. So that crack disappeared by day 5. One day later I got on the opposite side of my mouth a faint ring worm looking thing. Not raised, no blister no pain just where the top lip meets the bottom lip and on the side- like a faint discolouration but it looked like a red circle with white skin on the inside. I am not making excuses but I had been riding in the wind and it was hot and I had been licking my lips a lot cos of the crack. But it just showed up yesterday and today it looks better. I stopped into the pharmacist tonight she also said it doesn’t look like herp but I see it is very dry but not painful. I also I have dry flakey nose and a painful lump under skin. Sorry this is a novel again lol
1)please be honest do you feel this is herpes?
2) could it be herpes if crack lasted 5 days and then circle discolouration on opposite side of mouth got better on day 2 of it been there?
3) my four legged fur baby had an unexplained ulcer in his mouth- he licked my sister in laws lips and then he wakes me up with licks on my mouth all the time, can my dog spread herpes or catch it?
4) how likely is it I caught herps from the spoon incident?
October 18, 2015 at 4:01 pm #10112
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!
2. extremely unlikely
4. So close to zero I can’t imagine anything closer
October 25, 2015 at 7:30 pm #10290
Hi terri, I believe I still have one question left in this round. I can’t stop crying this is ruining my life so to refresh your memory I had unprotected oral and protected sex in early June since then I have had a reocurrent single lesion pop up 3 times – the third been this week, all three times have been in the same spot right at the entrance to the vagina opening. The first time it popped up was 5weeks roughly after the incident. I’ve had around ten herpes test, 2 swabs (one been on the second day it was there, the second time it appeared) and then 14 weeks 3 days after the incident I had negative western blot for herpes (done in Australia ) . About 15 doctors have visually looked at it and no one believes it’s herpes but me- my symptoms clearly show I’m not been delusional. I can’t stop crying. The lesion usually lasts about 1-2 weeks and is grey in colour and I can rub it and it doesn’t hurt. The derm and gyn say maybe an arphous ulcer but I think that’s because they don’t know.
1)I just need to know if not herpes what could it be??
2) I had every symptom of herpes- the tingles on and off and constant watery discharge and constant burning on the vulva for 3 weeks straight after the incident (no ulcer til 5weeks) do you think I contracted it even though all tests negative
3)would the western blot in Australia be different from your western blot over there? I’m thinking its hsv1 and our western blot here maybe missed my infection at 14 wks 3 days
4) sorry this is so long again. This is taking over my life not knowing is it or isn’t it I am so depressed and just want to know
October 27, 2015 at 11:30 am #10310
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.
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