Need Diagnosis

[Frustrated]

I have had intra oral symptoms come and go since late February/Early March and Genital symptoms since mid-June, which have never fully gone away since (probably due to poor health and excess alcohol). I have had a type specific igG blood test (including varicella) every month since May and all have returned negative, I even got an igM out of desperation. I have had both my oral and genital symptoms swabbed several times and sent for A) Viral and Bacterial Culture and B) PCR. Again all returned negative. I have had one visual diagnosis of genital symptoms, however this doesn’t help identify type or enable me to start making decisions and move on with my life. I have read about Western Blot, however I live in Perth, Western Australia. My question is, what other tests can I take to get a definitive answer on this?

[Terri Warren]

I think the western blot is available in Australia, actually. I would recommend getting in touch with Anthony Cunningham if you can for that – I believe he has some access to that. The other possibility is that you could have blood drawn and ship it to us and we can get it to UW. And of course there is always the strong possibility that you don’t have herpes at all. A visual diagnosis of herpes is so variable – one study found that that method of diagnosis was wrong 2 out of 5 times, when done by experienced STD clinicians. Also, usually oral herpes does not manifest inside the mouth and also not continuous as your symptoms appear to be.

terri

[Frustrated]

Thanks very much for the information. I’ll try and get in touch with Anthony Cunningham, you don’t happen to have contact details for him? My intra oral symptoms appeared a week after a one night stand whilst travelling through the USA earlier in the year. I first became concerned after what was 25hours of drinking in Vegas I noticed that where there had been a white spot on the roof of my mouth, there was now a scab, I didn’t see the spot again for about a week. It comes and goes almost weekly. Twice it has increased to a fluid stage and burst, usually though it just becomes a blister for about 4-5days and then recedes. I also came down with a sore throat the morning after and what appeared to be the flu a couple of days after that. We used condoms for intercourse but I received unprotected oral, there was also some very deep kissing, so I think it’s HSV1 unless she had an oral HSV2 infection. I’ve accepted I have something and simply wish to find out what that is now, thank you again for pointing me in the right direction

[Terri Warren]

I am actually going to see him in 2 weeks, I hope, at a meeting in Brisbane. I will ask him about this and report back. Your symptoms honestly sound nothing like herpes to me because they are inside your mouth, but if you have had them PCR’d and they are not herpes, this also speaks to herpes not being the culprit. Also, if you did manage to get a western blot and it was positive for HSV 1, it would not tell you that what you are having in your mouth IS HSV 1.

Terri

[Frustrated]

Thanks, that would be great. I know the serologic result won’t tell me where the HSV is, however I know from family history and my own sexual history that prior to February I was not infected with any HSV. Not having HSV is obviously the desired outcome but I’m really just looking for a definitive diagnosis. I haven’t started any anti-viral therapy because I don’t want to delay any results and I also have an appointment with a dermatologist. I’m hoping I’ll have symptoms when I visit this time, last time my symptoms were there for about 5days and the morning I went to the dermatologist they were gone, so he wasn’t able to shed any light on the situation. It’s come to a head because my partner tested negative in April and again last week and wasn’t showing any symptoms (she is in America and has to pay for her tests) so we decided to part ways to ensure she remains HSV free. Now though, I’m confused as to whether the oral and genital symptoms are related and if not, then I must have gotten the genital symptoms from my partner when she visited in June? Although we’ve both had full STD screens including HSV and they’re all negative, I however am displaying symptoms so I’ve still got to chase a result.

[Terri Warren]

So I’m curious about how you are so certain that you have never been infected with any type of HSV prior to February. Many people acquire HSV 1 asymptomatically as children from adults with cold sores and never know until they are tested. And then the screening test misses 25% so they never really know, which may be just fine not to know, but to so very certain without any western blot is, I think, an error. The same is true for her testing in the US, I might add, so breaking up to keep her herpes free seems a bit of a stretch and since 57% of the US population between 14 and 49 has HSV 1 anyway, a bit futile perhaps for her future interactions with adults in the US.

Terri

[Frustrated]

No one in my family has ever suffered from cold sores, however I could obviously have been exposed by a family friend or whilst at a childcare facility. If my symptoms were purely oral, then I could attribute the breakout to poor health possibly? But the genital symptoms would rule out asymptomatic acquisition as a child. I’ve had type specific blood tests routinely every 6months since I was 18 (I’m now 24) and never returned a positive result nor displayed symptoms. You could be right, maybe it isn’t Herpes, but everything began after the encounter in the USA and prior to that I had never had anything like this, the longevity and presentation of symptoms are what concern me. A recurring ulcer/blister on the hard palate was the initial flag and then since June the genital symptoms have really worried me. I think I contracted some type of HSV and the reason it never showed genitally was because I wasn’t sexually active between March and the end of May until my partner visited and then subsequently became very active and possibly aggravated/irritated the area and triggered an breakout? I was prescribed kenacomb ointment and this further aggravated my symptoms. After that aggravation was when I was visually diagnosed and prescribed Famvir, which I didn’t use as I’m not currently sexually active and not suffering from the symptoms. The breakup was more about the fear of contracting HSV genitally and affecting her ability to have children, however you are correct that maybe she’s positive anyway and my fears are unfounded. Another reason why I’d like a diagnosis. Thank you for your prompt, open minded and factual responses 🙂

[Terri Warren]

That was your final post on this thread.

Terri

[Terri Warren]

Hi, Sorry, I did not see that you had renewed your subscription. I met with Tony about your situation and they do not offer the western blot any longer, so sorry about that. If you really want it done, you can have your blood drawn and send it to us and we can get it the UW for processing – let us know if we can help! And if she wants to have her blood drawn, you could ship them both.

Terri

[Frustrated]

I would prefer to have it done. Obviously if I haven’t developed antibodies then it’s null and void anyway, but I am at my witts end now. The worst part has been calling hospitals and pathology centres and asking about Western Blot HSV and basically being told I’m an idiot or if not told them I’m certainly treated like it. This is beyond frustrating, no one seems to know anything about the test, I just called my Sexual Health Clinic to see if they could draw my blood and send it away, but they A) Have never heard of the test and B) Don’t release serum to patients… It’s bewildering that in this day and age there is little to no information available at apparent points of professional contact, nobody knows anything and nobody can help, it’s ridiculous. I understand that HSV holistically is a benign skin condition and takes a low peg on the totem pole of incurable disease, but this is beyond a joke. I like the idea of my partner or ex-partner also getting a Western Blot but she’s convinced her tests are accurate and she isn’t showing symptoms and so basically we’re treating the situation as I have it and she doesn’t. Which is fine, I hope she doesn’t too. The only downside is we are no longer in contact to discuss her possibly getting a Western Blot and unless I end up with a HSV2 result, there’s no need to re-establish contact. We both need time apart to distance ourselves from each other and sort out respective lives out. Don’t get me wrong, it was all agreed upon amicably, but now I’m really desperate for a result so I can start making some decisions. Would you (Westover) have to send the correct vials to me? I know different serums require different vials, I then would just have to find somewhere that would draw and handover the serum. Sorry about the ramblings

[Terri Warren]

You know, there is someone else posting on this forum from Australia and they think they have found a lab in Sydney that will do this. I just answered their post this morning so look in the recent ones – can’t recall who it was right now.

I’m guessing you can find a lab to draw your blood somewhere. Are you in Sydney? I believe I can help you if you can’t get the western blot drawn at the place the other person mentioned. Let me know, OK?

Terri

[Frustrated]

I am unable to locate the post that you have mentioned. There are only three other posts prior to mine that fit the time you mentioned. Do you happen to recall the username or title of the post?

Unfortunately I don’t live in Sydney, I live on the other side of Australia in Perth.

Any help you could provide would be greatly appreciated, this situation is laughable atm. I’ve already lost everything I could have lost due to this virus, so at least it can’t get worse, a diagnosis would be hugely beneficial at this point.

[Terri Warren]

I hope you can find a laboratory that will draw a marble top tube of blood, spin it down and you can ship it to me.
I can hear that you are upset but I’m still a bit unclear why you have lost all of what you describe as losing when you’ve had all negative tests, is it because of just the possibility that you might have HSV 1?

Terri

[Terri Warren]

Alternatively, here is the website for the lab in Australia that does the test. I know it is a ways away from you, however.

Terri

http://www.austinpathology.org.au/test-directory/index.php?testid=1517

[Frustrated]

I literally just got off the phone with Westmead Pathology and they were able to provide me with more information on the test in that five minute phone call than my doctors have been able to in months. Short of flying over for the test, I suppose I can have serum drawn and sent to them, at least now I know the test exists and I don’t have to feel like an idiot or crazy person when mentioning Western Blot to my GP/s.
Well I lost my partner, which is the hardest part of all this, it’s a long story but irrelevant to the post, so I’ll spare you the details. My lifestyle now changes forever and currently I don’t even know what I’m dealing with. It’s probably a bit dramatic and it will get better with time, my frustration had reached a peak until that phone call when I finally heard that the test does exist and is offered and I’m not insane. Thanks for the link, it’s good to see we both ended up with the same lab. I’ll go about organising a Western Blot and update you with the outcome

[Terri Warren]

Sounds good

Terri

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