Do I need western blot test?

[Seattle777]

Hi Terri

I received protected oral sex from a commercial sex worker. She had some lesions to the side of her mouth which I naively discarded at the time but now assume to have been herpes. Two days post exposure, I had a couple of white/yellow spots on my inner thigh (no PCR test). I applied some antiseptic and after 2/3 days the spots disappeared. No blisters.

Within a week I began to experience an urgency to pee. After 10 days, I went to bed with an extreme buzzing sensation in my groin, and was subsequently unable to sleep. That then lead to epididymitis. Subsequently prescribed ofloxacin, and a UTI medication which helped for a period of time.

Despite some red marks (not spots) on my penis and thighs, tingling on the insides and back of my thighs, as well as penile throbbing and pain, I was eventually diagnosed with chronic pelvic pain syndrome. I was given 3 weeks of clarithromycin to clear up any potential residual infection (by this time I had already repeatedly tested negative for all the usual STD’s, including a series of blood tests and PCR swabs on marks). Prescribed tamulosin to help ease the muscular tension. Since that time, I have twice experienced a solo white spot on the shaft of my penis, dismissed by specialists. Both spots disappeared within a day or two. The urgency to pee improved initially with the tamulosin, but then worsened again during December, at which point a mark appeared on the corona of my glans – dismissed as penile pauples, even though one looks like a blister trying to break through under the skin. These remain 3 months later, shape etc has not changed. I now also take amitriptyline to help realign the nerves and that, plus breathing exercises, have helped hugely.

I remain concerned however that I could have herpes. I took at IgG test in January, which proved negative for HSV1 (value 0.09, even though I have had cold sores on my mouth many years ago) and HSV 2 (less than 0.5).

Do I need western blot? I am in the UK

[Terri Warren]

I do NOT think you need a western blot, based only on your symptoms. And here’s the deal for you: you mention that you’ve had cold sores previously. The type of herpes you would get from receiving oral sex is that same virus – HSV 1. But once you have this virus in one location of your body, it is extremely unlikely that you would get it at a new location on your body (genitals). So I am not concerned about this with your encounter. And a western blot would NOT help you as we know you already have HSV 1.

Terri

[Seattle777]

Thanks. However, I am now not convinced that I HAVE had HSV1 on my mouth – I had only small cold sores when I was younger, but whether that was HSV1 I’m not so sure (I’ve only really learnt about the topic in the last 7 months!). If I did NOT have HSV1, does that make a difference to the advice you’ve given?

Also, if I HAD previously have HSV1 on my mouth, shouldn’t that have shown on the IgG test? Is it worth conducting that test again a second or even third time to be certain, or were the values low enough that I shouldn’t worry?

Finally, if I had previously experienced HSV1 sores on my mouth, why would that not appear on the genital area? And is it not possible that this could have been HSV2 on the mouth of the CSW? Within a high risk group, I understand that it is possible to have oral HSV2. The marking was pronounced and not a normal “cold sore”. If she had that, could she have passed it to my genital area even with protection being used during oral sex? How long would I have to wait until I know? Does HSV2 appear more quickly?

I’m sorry I’m asking questions that should be either easily answered through research (this to date has left me more than confused!), or if these are potentially questions that cannot be answered with any certainty.

If I DO need to take a Western blot, how can I do that from the UK? If it isn’t possible, can I travel to WA state (as a non US citizen) and get this done? I might be there on business toward the end of the year – though I’d obviously resolve this sooner.

The symptoms, tingling and general discomfort (which has mostly subsided now, 7 months on) are what causes me the greatest concern. I do have a very small spot in the genital area but it has been present for 3 weeks (at least when I noticed it) and it looks like a larger (white) pimple aligned with other normal skin pimples, so may be nothing.

Any further help and guidance appreciated.

[Terri Warren]

Any size cold sore is a cold sore – small or otherwise. It would prevent you from getting HSV 1 genitally. The IgG test misses 30% of HSV 1 infections so it may not have shown up on the IgG test. Repeating it is NOT helpful.

If you can find someone to draw and spin one serum separator of blood for you in the UK, I can work with you to get the lab requisition. You can no longer come to the US right now, as you know, I’m sure. Herpes would NOT cause symptoms for 7 months. And a herpes lesion would not normally last for three weeks.

Terri

[Seattle777]

Hi Teri,

I’ve left this a long time to reply to your previous message, but that is mostly because of COVID and the need to prioritise the management of my daily symptoms concerning the pelvic floor pain. That, is at least getting better, but is a long and very difficult process.

I saw on another message on this board that you had a recommendation of who to take a blood sample/spin blood through within the UK. I’m keen to do this as soon as possible if for no other reason than the worry is affecting my mental health. Can you point me in the direction of a preferred and trusted partner?

Worth mentioning that I have also had one or two red marks, on two separate occasions, that look like insect bites or minor abrasions. They have been temporarily itchy, but I realise could also come from shorts/belt digging into the skin. No sign of blisters and also they do not last for long (several days) – but is enough of a worry to cause further concern.

How can I arrange western blot if I find someone to draw/spin blood? What is the cost of western blot for overseas customers? I’ve not found any further detail on this to date.

Thanks

[Terri Warren]

The cost of the test, depending upon if you pay with a credit card or a check, is around $265. I don’t know who in the UK would draw and spin the blood – no one has ever told me who did it. I think you would just have to ask around. You would also need to pay for shipping of the sample to the UW, next day air. Could be spendy!

Terri

[Seattle777]

Hi Terri,

I’m sorry for not replying sooner – I had opted to focus on the other more immediate aspects of my symptoms.

I’d like to take this testing forward, and in the absence of receiving a reply from UW (I have reached out to them twice), I think I would like to action this through you. I’ve read how this works on your website, and have decided that I will only seek to schedule a video appointment with you once I have a day on which I am guaranteed privacy in my home. Not straight forward! How far in advance are your video consultations normally booked?

Also, can you advise on the sampling methodology required by UW? i.e. volume of blood, spinning technique, temperature at which the sample is to be stored during transit, storage medium (if any), how it is to be labelled? etc. I have a urologist who is prepared to help me with this process, and believes a local hospital can help with the drawing and spinning of blood – but in order to do this we need to know the exact protocol. Can you advise on this before we speak? I’ll need to first discuss with the hospital here in the UK to ensure it is something which they can do.

I’m also not sure if UW will send a Western Blot test kit to the UK. Are you aware if they will ship this internationally? If not, what is the alternative?

Finally, I’ve reflected back on the last 16 months and the primary tell tale signs have been a couple of blister like marks on my inner thigh (possibly from running shorts, they went in 2-3 days), followed by occasional solo spots visible on my penis or scrotum during the past year. None were painful, other than the one on the scrotum (and then only midly so), with all others the size of a pin head, white on a red base (and quite circular) disappearing within a day or two. Does this sound like hsv to you? Or am I just hyper-aware? I had some general soreness between the thigh folds (but likely fungal) & some itching just above groin. No concerns raised by sex health doctors.

[Terri Warren]

You can schedule a month in advance.
UW will NOT send a kit to the UK, no, but I have kits from them that I ship all over the world. It’s not cheap, but it can be done.
Your symptoms do not sound like herpes to me, no, I think you are being hyperaware. But if the blot can put your mind at rest, the value to you is priceless.
The lab protocol is outlined carefully in the kit so I don’t think we need to go into great detail about that here. The kit does contain one serum separator tube that needs to be drawn and spun down and the serum transferred to the enclosed plastic transport tube. labels are included. And it needs to be shipped overnight.

Terri

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