HSV1 Continuing

[Hadenough]

Hi Terri,

I have nowhere else to turn so thank you for listening.

I received oral sex from a CSW almost 3 years ago and I have had symptoms/changes ever since. It was a drunken one off moment and it has changed everything.

My penis glans have changed, I need to pee more after drinking water, my stools have changed and it hurts for a prolonged period after defecation. I have had red spots on my bum and red/soreness. I have had crack like cuts in my bum crack. I have a general itching and dryness around the genitals and bum. None of this happened before the incident.

I know all the above does not sound herpetic.

I have had numerous Sti tests in the UK all negative except HSV1. I have never had a coldsore but understand this would not always show. This was my first HSV test as not readily done over here.

I have had 3 swabs on cuts/spots but all negative. Dr commented it may not have enough fluid or sample.

I have tried 3 x antibiotics, cipro and Doxy for 4 weeks and another one for 2 weeks, I have tried flucanazole for 7 days. I have tried all the creams around, even strong steroids.

I have had a cystoscopy, flexible sigmoidoscopy, pudendal nerve block and seen countless professionals. I also had an MRI of head and body. I have seen so many professionals. My GP thinks it is in my head. It really isn’t.

I tried acyclovir but that didn’t seem to help.

My first question is can you catch an acyclovir resistant strain? or does it depend on the person?

My thoughts is that HSV has caused Proctitis but as this is rare people ignore the connection and won’t refer me. Have you experienced persons with HSV Proctitis if so how were they treated?

I’m terms of my penis glans a dermatologist has implied I have lichen sclerosus, have you come across this from a HSV infection.

I feel positive this is herpes due to the above but can’t prove it.

Is there anything else I can take to help? Large Acyclovir dose?

I have more issues but this is a start.

Thanks

[Terri Warren]

First of all, the herpes you would get from receiving oral sex is HSV 1, not HSV 2, so you can narrow that down. your symptoms sound absolutely nothing at all like herpes to me. None of it.
You seem positive it is HSV yet you have no sores, acyclovir doesn’t make a difference, and you have negative tests. I’m confused.

We do have a person in London who can draw and send western blots to the University of Washington. If you are interested in working with her, let me know. We would need to have a video conference to talk about all of this.

Terri

[Hadenough]

I hear what you are saying but there is absolutely no other explanation and I am lost. I never knew I had hsv1 (no coldsores or symptoms) until now. It was drunken and our genitals may have touched but definitely no penetration.

Can I ask is a acyclovir resistant strain passed on? Or can it change from person to person?

Have you come across herpetic proctitis? If so how is this treated? Would it just subside when other symptoms have gone? Or does it linger?

I’d be open to a call, would I be able to send pictures? Also a western blot. I need to know costings first if possible.

[Terri Warren]

People rarely have HSV resistant to acyclovir – the rate is 0.3% of strains are resistant. And if one did have a resistant strain, it would still be antibody positive.
I have not seen herpes proctitis but it has been documented, yes, and it would subside in days or weeks after the outbreak.

If you met with me, I would evaluate pictures. The western blot is about $450 total.
I think you are totally barking up the wrong tree on this diagnosis
Terri

• This reply was modified 3 months, 3 weeks ago by Terri Warren.

[Hadenough]

Okay I may take you up on an appointment. Would you have any recommendations for practitioners I can see in the UK? How much is it to meet with you?

I have had HSV1 confirmed by blood so as mainly oral seems to stack up with this.

Noted regarding resistance, do you know if a resistant strain would be passed on? I’m worried this CSW had hiv and has created a resistant strain and passed to me? Am I making that up? Is that how it would work?

I had shingles when I was a teenager, could that effect Acyclovir resistance? Presume I took acyclovir for this?

Could herpes damage your anus/rectrum
Permanently or would it be just when you had symptoms it would flare up then subside?

Sorry I have spent so much money on this and need to work an answer.

The oral sex was 100% a trigger and since then I get spots and cuts around my anus that come and go but a constant pain and irritation.

Like I said I had 3 swabs, it took a couple of days to get in and not weeping fluid, how accurate can these be? Could you swab on skin/redness/spots or do you need the fluid?

From what I have read 50% of the world population or there abouts have HSV1, how many people are unaware of this?

Do you know where WHO have got their figures from? What was the sample size?

Finally and a bit of a curve ball. I had a pudendal nerve block and 4 days later I had a stroke and ended up in hospital. Could a pudendal nerve block cause a genital outbreak to be redirected to my brain causing encephalitis?

I seriously cannot look past herpes on this and has changed my life.

[Terri Warren]

Herpes would not damage your rectum, no. The swabs can be done from any kind of tissue presentation – fluid does not need to be present. The rate of HSV 1 infection varies from country to country. I don’t know about the WHO data. A pudendal block would not cause a stroke. I’m sure what HIV and resistant strains of herpes have to do with each other.

I honestly don’t think it would be helpful to make an appointment with me. You seem quite set on HSV 1 being the cause of lifelong problems and I would not agree. I suggest you Google herpes doctors in the UK for a better reference

Terri

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