Likely? Places to go for support?

[cant deal]

IF POSSIBLE COULD THIS PLEASE BE ANSWERED WITHOUT BEING PUBLICALLY PUBLISHED ON LINE?
Dear Terri, my daughter is a 20 year old girl who studied several months in Europe and just returned to Australia. She believes contracted herpes about 5 months ago. She is highly distressed much of the time as I feel in the past few months has exhibited almost every herpes symptom – except for tingling and blisters that contain fluid, AS YET… Here is the history as she told it:
“Around 3 months ago I have vaginal itching and a discharge. I went to an older male dr I didn’t like. He examined me, diagnosed thrush and gave me medication. He took some swabs including urethra but not sure for what. It went away. But a month later similar symptoms returned. Vaginal slight discomfort after urination, a couple of lumps, no discharge and an anal fissure later (which was suggested might be caused by caused by diahorea as I have gut issues that often cause gas and diahorea straight after a meal).He said the lumps didn’t look like anything. However, I know these are all also symptoms of herpes. He gave me more thrush meds and this time it did NOT work. This has continued to disturb me an so i went to a female dr who gave me herpes testing and examined me. She also said she could not see any visual signs at that time. She provided an IGG test (at around 15 weeks post infection). It did not provide numbers but came back just saying HSV1 negative, HSV2 negative. So i do not know how high or low the numbers were. It said “you do not have herpes” She described the results as ‘very valid’.
As soon as I returned to Australia I went to my dr. who returned a negative for thrush – so it is definitely not this causing my symptoms. She examined me-including internal again and could not see anything at that time. My symptoms still included a very mild discomfort (not pain or stinging) straight after urination, which comes and goes across time. It has disappeared for a couple of weeks.
And then 4 days ago I developed a small rash of ‘pimples’ – tiny red spots with little white heads – on one side of my upper groin with a couple of small lymph nodes beneath. Stupidly I picked the spots to see it there was pus. They are small and have not yet developed to blisters (even the unpicked ones). They are currently red with a small white head in some cases. I think they are going away a little. The anal fissure stung a little and is now healing up (she looked at that too).
So I went back to the clinic yesterday. She said the rash was untypical and looked more like folliculitis but could not be certain. She felt the little lumps beneath and said they were lymph nodes. (was given bacterial ointment). She took swabs of the spots but there was no fluid to wipe and it had already been three days. She wiped firmly across them at 3 areas. She also took a large raft of STD tests and another IGG.I would now be around 20 weeks post infection. I gave 6 vials of blood. She said i did not look like typical herpes but would always act on suspicion and take all necessary tests.
I feel in my heart these are all too coincidental and that I was a very unlucky contractor of herpes. I am very depressed about my future.
Today I have the reoccurrence of that uncomfortable vaginal feeling that I had abroad about about 3 weeks ago last time. Not pain or itching, more of a dry feeling. I also have the discharge returning too.”
This is my daughter’s story. She came to the original conclusion of herpes because she googled her symptoms and felt she had many.So basically symptoms have been coming and going over several months.She has not had any precursal tingling etc. She has not had the blisters, she does not have stinging or pain; but now has the small pimply rash. It doesn’t really hurt, or itch but the small glands beneath it are tender when pushed. The same dry slight annoying feeling that is felt most directly after urination has come and gone several times and sometimes with or without white discharge (no smell). I fear it must be herpes and that she will take the test results very badly, having already said she does not want to go on living if she has this – and she has an anxiety history. I cant seem to find any support in Australia on line and dont know how to handle her if the news is bad. I totally understand how she feels.
I would like to ask you how the timeline of these events and the symptoms mentioned, align with your wide experience of herpes? And the timeline of symptoms. How trusting should I be of a second round of IGG tests? They are about 4 weeks after the first lot – which said negative for both. I dont think the Western Blot is available in Australia but would do my best to find and obtain one if you thought it would help – for instance if my IGG shows a high negative number ie .9. Because I cant stop worrying or trusting anything that is said. I just have a feeling. Nobody gets a weird coincidental collection of symptoms typical of herpes for no reason, I feel. I have scanned dozens of herpes sites and viewed hundreds of pictures. So has she.
She is also battling an awful cold that manifested on the way home. Could this be related ( she is prone to getting colds). She had a reqlly sore throat that has swabbed positive to strep, And has lots of mucus and a really bad cough. Is this a sign or related? Was prescribed LPV. and almost finished it.
Also, by the way, the Melbourne sex health clinic does not even provide blood tests, because they consider them unreliable – can that be true? Thank you

[Terri Warren]

I have no way to answer this question without doing so publicly. I’m not clear why you don’t want me posting the answer here but I don’t have any way to do that anyway. What would you like me to do?

Terri

[cant deal]

Yes please respond

[Terri Warren]

I think negative IgG testing at 20 weeks post possible exposure is very reliable. It is slightly less reliable for HSV 1 than it is for HSV 2, which is the traditional genital herpes virus. If she received oral sex at the sexual encounter, then she may be at a very slight risk for HSV 1. The test will pick up 91 of 100 cases of HSV 1.

Her symptoms honestly don’t sound herpetic to me. Yes a person with herpes can have some discomfort with urination but there are other things associated with the urinary system that could also cause that. If she has a rash now, she should have someone knowledgable examine and swab test the rash, if the clinician feels swabbing is appropriate.

I do think you can get a western blot in Australia, perhaps. If you can contact Dr. Anthony Cunningham there, he might be able to help you.

But in summary, I don’t think you daughter has herpes but once a person has convinced themselves that they do it is difficult to change their minds.

The blood test with two negatives should be considered reliable – I don’t agree with the sexual health clinic’s opinion.

Terri

[cant deal]

Thank you for the quick response and the Australia reference. You opinion that it does not sound likely, does make the waiting more bearable. At each stage that she saw a doctor, none has said it presents like herpes.But I am aware, som people are not typical. Just to clarify, the negative igg tests were first done at 15/16 weeks. It was done in a modern Eurpoean city, but I just wondered how good the etst was if it didnt give any numerical values – just HSV1 NEGATIVE, HSV2 NEGATIVE – what do you think re this test? The 20 week one is the one we are currently awaiting results for – along with a swab for the rash. Do you put any weight on the cluster of other less common symptoms?? ie 1/’flu like symptoms’ she has a really bad cold that original started with a very sore throat and glands (which has gone) lots of mucous, stuffy nose and hacking cough (LPV ab prescribed). 2/ small anal fissure. 3/ swollen lymph gland in groin beneath rash. The rash at around day 5 now did not blister and is seeming to recede, as the ‘pimples’ are now flat and look more like small red/purple dots.(bacterial cream being applied). The discharge was fleeting and lasted only a few hours. The discomfort after urination just seems to come and go randomly days or weeks apart. If I could also says an opinion at this point. I knew very little about herpes or stds prior to this and have been thrown into a different world due to the necessity of researching this. I had no idea it was so common or rarely recognised by those carrying it. I cant believe how poorly authorities worldwide have handled this. I t should be compulsorily checked for due to its infectiousness. If anything else was this prevalent and growing fast, it would be treated as an epidemic. Far more money should be invested into finding a cure for something so widepread. Secondly, as I see from my daughter, it is regarded as similar to a life sentence. She is beautiful looking, smart, popular and at university studying for a top career – yet I know if positive, she would throw it all away and slump into a deep depression , or worse. She feels there would be no love, marriage or children-so not a life worth living. Therefore to me, it seems to bear a stigma akin to aids. Yet from my reading it is no more than a small skin infection. It doesnt kill you, it doesnt make you infertile and I just dont understand why there is quite the level of grief around that. It seem to all centre around being a socal pariah – yet passing on chickenpox or cold sores doesnt elicit the same response? Again I think there should be a concerted effort by authorites and others to 1/ get a cure faster and 2/ destigmatise. I am sure if more people realised they were carrying it and how much of the poulation was infected, it must surely lose its sting. An occasional rash (if even that) is surely not the end of the world.even if most of us carried it, so what. There are also many people carrying the genital wart virus, and that has a cancer link – yet that does not seem to attract the awful responses that herpes ilicits. If they do not find a cure and/or vaccine soon, I believe the majority of us will surely be carrying it? In my efforts to find some support, I found an American site called H Opportunity which I recommend to others, as the founder, himself a carrier, seems to share my view. I dont know what these test will show for my daughter, but for those of you who are infected, I really feel your pain. It is so unwarranted. You are exactly the same person- just with and occasional rash. So many good and unsuspecting peole have been exposed – and it need not have happened, if there had been a public information and testing drive. I dont see that it should have to make the deep impact on your life that it does – my thoughts are truely with you. I am so glad I am now educated about this and see it in a different light.

[cant deal]

apologies for the mistyping!

[Terri Warren]

I agree with your assessment regarding the overly emotional response to herpes by the population in general. No question it is overblown.

Yes, I think the test she had done at 15/16 weeks should be adequate. It doesn’t matter that there is no value stated since it is negative. I will be eager to hear about how the swab test goes but I am strongly believing that it will be negative.

Let me know.

Terri

[cant deal]

The swab and the igg came back negative, thank God. Now I have the difficult task of trying to convince her to let this go and stop doubting all the results, past and current, and stop wanting more tests. I am assuming you will think this is definitive? In dealing with people with this mindset, what can you recommend as things to say, phrases to use, to dissuade from further action and to just accept the results please?

[Terri Warren]

Good. I thought it would all be negative.
For people who believe they have herpes despite repeated negative testing it is very difficult to get them to believe otherwise, honestly. It is a syndrome that I have witnessed over all my years in this business. I think usually there are a few things at play:

1) some kind of sexual experience outside of their normal sexual experiences that they don’t feel good about or comfortable about.
2) they read symptoms of herpes on the internet and pick and chose which symptoms they have that fit what they see on the internet and decide that must be what they have
3) They are extremely unwilling to give up the idea that they are infected with herpes

I suggest to people that if they want to believe that they have herpes despite testing to the contrary, they can decide to live as though they have herpes. I mean, what else is there to do? They need to tell sex partners they believe they have herpes, they have to purchase medicine for herpes, they have to avoid sex when they have the symptoms they believe are herpes, all of that. Sometimes once they start all of that, they decide that it is ridiculous and give it up. But sometimes, they decide to live as though they have herpes anyway. The thing is, you have to live one way or the other. Being in limbo about herpes is not fun. However, some people live that way anyway. I really don’t pretend to fully understand this. Sometimes people chose to see therapy to help them work with this problem and that can work too.

Best,
Terri

[cant deal]

It is with a heavy heart I contact you again. I have just purchased 3 more questions. Things have changed. My daughter got tingling in one buttock 2 days ago. Yesterday she felt tired and achy. She has a cold and cough that never lets up. Then just now she showed me what look like the starting of 2 blisters on her groin, which she describe as sore. They are on the same side as the tingling buttock but the opposite side to the original ‘rash’ which is long gone. She had the first igg in one country at 15 w and an igg an igm at 20w in another country. All negative. Logically this cant be herpes but I have looked at people talking on a herpes site, hc, and many seem to feel they are suffering herpes despite numerous negative results. Could it be shingles? She has friend who had it on her genitals. I also asked her if she felt she had engaged in “high risk” behaviour and she said no. Although I am sure it is possible with even low risk activity, it is just skin to skin. I have told her it isn’t herpes, and could be caused by rubbing, but look at the chain of symptom events! Could she possibly be that unlucky? Could it possibly be anything else? I don’t even want her to be tested again, I don’t think she could bear his.

[Terri Warren]

I’m sorry about this new development.
Do you know any details about her sexual encounter? Was she the receiver of oral sex from this new person or did they just have intercourse? I took a quick look back and could not easily find a description of her sexual encounter. If she was the receiver of oral sex there is a chance she could have HSV 1 and the test did not pick it up.

My recommendation would be to go in right away to have the blisters swabbed while they are still blisters – like today. How big are the blisters? Can you describe them more fully to me? And where in the groin?

Terri

[cant deal]

It is 5 am on a Sunday morning here so here dr is at least 24 hours away. I doubt it would have been intercourse or her receiving oral sex. She has said it would be so unfair as she was not promiscuous like some of her friends. Given behaviours here I could only imagine skin to skin contact – wouldn’t that be enough? or oral sex to him. They looks so early that I could not easily see. Her eyes are better. But she said she looked because it felt a bit sore. To me it looked like yellow spots that were about to raise. I am tempted to keep persuading her its nothing, to keep her life on track, she is emotionally fragile and at the very least would slump into deep depression. Her uni course would get dumped at the very least. The academic year doesn’t start for 2 months. If she knew now she would defer the year. If we got through this without her knowing and it reoccurred later, and she found out it was herpes later in the year, she would drop out and fail. She has said numerous times if she had herpes she would kill herself. I am torn. Despite tests, I had dreaded this would happen – ever since she said she had tender lymph nodes last week. They were on the other side of the groin under the few pimples that looked different to this. They went down quickly with antibiotic cream and the nodes stopped being tender. I realise that not much else can cause nodes. And then when she said her buttock on the other side tingled generally around the buttock, 2 days ago, I just knew. The spots were similar location to the rash on the other side, right in the crevice and near the labia or a bit higher toward front. I don’t think she felt nodes on this side -at least yet. The tingling could not really be anything else could it? 4 doctors and 2 sets of blood tests failed to see this! She even had swabs in side and out at times – though I know they would be unlikely to pick up something unless weeping. Are there harder to detect strains of herpes developing? How often have you seen herpes slip through undetected in this way? You didn’t answer my question about shingles? Does it have the same tingling pattern on buttock? All these symptoms wouldn’t be here for nothing would they? When she wakes I will look at the progress. Please address my questions ie how rare is this?, shingles? Is she truly this rare an so unlucky one? What of the tingling? Should I calm and deceive her? Where else could she get tested on a sunday? thankyou

[cant deal]

sorry, just to add, could her LPV antibiotic have effected test result?

[Terri Warren]

The antibiotic would not change the test result, no.
You know, when you describe something as blisters, that worries me. Blisters are so classic for herpes but in your most recent post, it doesn’t really sound like she has water blisters on her thigh but rather something that might be blisters. This is difficult over the internet, I know.
It is also very difficult to assess her risk without knowing what kind of sexual contact EXACTLY she had. If she was the giver of oral sex to this person and got herpes from the contact, her symptoms would be oral, not genital. Symptoms show up where the contact was.
I feel pretty limited in how much more I can help you and your daughter without having more specific information. I don’t know if you and she can talk about these things this frankly and openly – not easy with a daughter, perhaps.

Terri

[cant deal]

Yes it is adifficult discussion. She says she didnt do “high risk” which indicates no intercourse and she is very unlikely to get oral sex from a stranger. The most I can imagine is external skin to skin contact-which may be enough. Its been a couple of days since she showed me and my eyes arent great but they seemed in the crease of the groin on the opposite side to the other earlier pimples which looked quite different (small red and with white head) and they are all gone now. She had slightly swollen nodes below those pimples, but hasnt mentioned them being belowthese new ones. These from memory looke pale small round and flat at the time. She has pulled away from talking about this and I dont want to bring it up. However I think if they had raised to blisters containing fluid, she would tell me.
How long do they take to fill?
Does it make a difference which side the swollen nodes are?
The tingling feeling a few days ago generally on one buttock is the worrying sign to me.
None of this whole 5 months has been typical. The time lines seem all out of place. In the early months the symptoms could be a number of things. These more damning events seem to only be occurring now-at the time of her second IGG. If it wasnt for the nodes and the tingling I would have dismissed all the other things. Particularly in the light of 2 set of negative results.
How often does such an untypical case like hers occur?
So I really only have the above questions for you now. I realise I have to wait to see what else occurs before I can come back to you. I think I have one queston left after this?

[Terri Warren]

It sort of depends on the skin to skin contact. Usually that is not enough for transmission.
Blisters of herpes go from flat to fluid filled in a matter of hours or a day
Usually, nodes will increase in size on the same side as the lesions.
I don’t think she has herpes. A case like hers with these symptoms would be extremely rare.
I’m sorry, you have used all of your questions at this point if I am counting correctly.

Terri

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