Me again! Myriad of symptoms

[Confusedblossom]

Hi

Well….recap hsv1 positive via western blot your clinic. No seroconversion to confirm what I suspect was a horrific primary followe d by frequent and consecutive outbreaks am nerve pain. Antivirals don’t seem to help at all. Diagnosed with post viral syndrome which I believe is from hsv1.

I do not have any typical lesions or blisters. I have various rashes and bumps that seem to proceed nerve pain. I honestly don’t know what symptom is from what….I was so stressed during this ordeal I could have also activated shingles. But again, I get no rash of any kind. I have never swabbed positive via viral culture or pcr swabs. I realized te pcr swabs were taking during suppressive therapy.

My question is;
1) Even if all these 8 swabs I did that came back negative were a result of herpes, bc I was on suppressive therapy can I conclude that on suppressive therapy these bumps etc are not contagious bc they didn’t swab positive or pretty much do I scrap all the swabs I got as void?

2) I also believe I autoinnoculated during my first few months as I suffer from eczema and I could have easily scratched different places spreading the infection. This nerve pain I get arms, across upper back, torso, face, genitals and thighs to souls of feet. Of course not all at once. Been tested negative for ms. I developed a rash and I can’t swab bc I am afraid to go off suppressive therapy. Do these pics look like h to you? It is on inner thighs. The other one is my inside right forearm. Have u ever seen h react like a rash like this? It it hes a bit. Came up after a shower. Been around for less than 24 hours so far maybe 10. Should I swab even though on antivirals?

Vent alert: I know or let’s say I hope some symptoms I am experiencing are not h and maybe everyday things or perhaps from post viral syndrome or eczema or heat rash or shingles. It’s the nerve pain that comes and goes and then proceeds these harmless looking bumps and rashes. It’s so mind boggling!!!!

Have u ever seen a case of someone with frequent ob (meaning consecutive) with little time between ob for a year and a half?

What has been the worse case you have seen? I can’t be the only one experiencing this!

[Terri Warren]

I know you are very frustrated by your situation and you are eager to discover the cause of your symptoms.
However, these pictures look absolutely nothing like herpes to me. These pictures are of a generalized rash, and this is simply not how herpes presents.

In regards to your question about the swabs: If no virus was identified from these samples, then yes, at the time they were gathered you were not infectious from those particular lesions.
I don’t think you need to bother swabbing these rashes, no. They are not shingles either.

I don’t fully understand this comment in regards to HSV 1 from your post “Well….recap hsv1 positive via western blot your clinic. No seroconversion to confirm what I suspect was a horrific primary followed by frequent and consecutive outbreaks am nerve pain.” What do you mean about no seroconversion? You are already HSV 1 positive. Do you mean no seroconversion to HSV 2?

None of your physical symptoms (rashes) look like herpes to me, none of your PCR swabs have come out positive. Antiviral therapy doesn’t make any difference, you said. Do you think you could start to believe that they are not herpetic? I don’t have an answer for your nerve pain but no, I have never seen someone with HSV 1 have the problems that you have been describing on a near constant basis. When you say these are outbreaks, how are you defining outbreaks?

Terri

[Confusedblossom]

Hi Terri.

I meant to say I have no blood test that was negative and then seroconverted hsv1 to positive as I was one of the lucky people with ELISA that always come out negative. I so not believe I have hsv2.

Well you hit the nail on the head about identifying ob. To be frank, I identify them mostly when nerve pain precedes bumps. This could be a false indication obviously, but I don’t have much else to go on really.

I will get off antiviral therapy when I feel I can and start swabbing again. If those are negative I guess that’s it. I don’t have to be comfortable knowing I tried. My whole issue is not to prove I have ghvs1, I know I do. I need to isolate each symptom or bump in a certain area to prove or disprove it is h. I need to know what is contagious for me to be able to have a normal sex life and to feel comfortable with my children (I also have oral hsv1 with similar nerve pain and sometimes tiny bumps).

I hope this next round of swabbig will give me the peace I need.

Right now there are lots of issues and sex becomes very stressful.

I have a therapist that specializes in people with medical conditions that are difficult to diagnose…people with Lyme or chronic fatigue etc. so she is helping to guide me. Your service has been very helpful as well as your advice. I am hoping all this will be resolved in a few months.

Kind regards

[Terri Warren]

So I’m sorry – its been a while since we started this conversation. Can you remind me how you know for sure you have both genital and oral HSV 1? you’ve had positive swab tests from your mouth and genital area?

Terri

[Confusedblossom]

No apologies necessary. Thank you kindly for being concerned and professional.

I have never had a positive swab in either place. And I have done many. Some on antivirals and some not. I have a positive blood test and based on research etc I was able to identify my primary (no lesions in either area but lots of burning nerve pain). I have ruled out as much as I can in terms of medical conditions and seen specialists and the only other diagnosis I got was post viral syndrome which proceeded infection but dr wasnt able to identify which infection as all his tests came back negative except hsv1. When I got negative ELISA repeatedly and then positive immunoblot he said well, at least we know what you haven’t got and just sent me on my way. He couldn’t explain discrepancy in tests and this was a top infectious disease dr at a major city’s top hospital. So I have given up w conventional drs and trying to figure it out on my own which I can tell you is very lonely and I am definitely not a dr but I a smart gal that is good at research and only using the best resources. Needless to say I could be totally wrong and I could be experiencing lots of things but I don’t have a choice really.

So thank you for being patient as I know my thoughts can get jumbled. It’s not fun when your body is doing weird things that you can’t control and then add the layer of potential contagious is trying at best at times.

Maybe I just shed very little but have lots of nerve pain.

[Terri Warren]

Well, it would be nice for you to have a firm outbreak, but while you are still on antiviral medicine, I think it is going to be very hard to sort out the location of your infection.

Terri

[Confusedblossom]

Hello

So I had burnings nerve pain kind of groin area where your underwear line on my right side and then the next day the other. Then I felt around down there and felt two small bumps a half inch from underwear line. I also felt electric shock pain in my vagina. Haven’t felt that since my primary. I am still on famvir btw

So I feel around to see if I could see a lesion and I just felt those 2 small bumps. I squished it to see if anything came out. Nope. I picked at it a bit and plucked some hairs in my pubic area to see if it was folliculitis. It hurt a bit to pick it. Was just skin and it bled a bit. But the skin was a bit hard to touch.

Anyway I am attaching pics at various stages. I think it may be a genital wart or just a damn coincidence.

1) does this look like a genital wart to you? Why was it a bit hard?
2) sexual exposure is as follows:
A) 2 months ago protected sex w new partner.
B) November last year received oral sex only one time from a friend.
C). August last year received oral sex only from a friend
D). March last year protected sex with partner
E). January last year unprotected sex with partner in D
F). Before that had sex with my only partner for 20 years. I was a virgin when we met and I have had no issues while with him.
If it is a genital wart…who could I have gotten it from. None of my partners obviously said they had them unless they didn’t know or carries the virus. Who would it be from?
3). Could I really easily pick a wart off and by putting hydrogen peroxide make it clear in 4 days?
4) does this look like anything to you?

5) The only thing that bothered me was be it was hard and bc I had profile at same time. Could hpv Genital warts bring about nerve pain prodome

6). I can’t go to Dr to check be now it’s healed. Could a wart heal that fast? Do I wait til stgng else pops up? How contagious am I if these are warts?

I am really upset.

[Confusedblossom]

So the first pic was how it looked healed and the last one how it looked when I found it.

I am attaching one of how it looked after I picked it a bit.

If these are warts I will lose it.

Not only do I have frequently recurring oral and ghsv1 I now have warts to add to list.

Could a dermatologist scrape the skin to see if it’s hpv? There’s nothing much there to scrape. I am really panicking. I never thought warts til I picked it. I have never had issues like this before there.

[Terri Warren]

1) does this look like a genital wart to you? Why was it a bit hard?
Yes, it looks like a genital wart in the picture. Obviously, an in person diagnosis is far more accurate.

2) sexual exposure is as follows:
A) 2 months ago protected sex w new partner.
B) November last year received oral sex only one time from a friend.
C). August last year received oral sex only from a friend
D). March last year protected sex with partner
E). January last year unprotected sex with partner in D
F). Before that had sex with my only partner for 20 years. I was a virgin when we met and I have had no issues while with him.
If it is a genital wart…who could I have gotten it from. None of my partners obviously said they had them unless they didn’t know or carries the virus. Who would it be from?

None of the oral sex only partners is the likely source. And condoms offer limited protection against HPV. So other than that, I’m really not clear that you can nail it down well
3). Could I really easily pick a wart off and by putting hydrogen peroxide make it clear in 4 days?
You could, yes
4) does this look like anything to you?
It looks similar to HPV to me

5) The only thing that bothered me was be it was hard and bc I had profile at same time. Could hpv Genital warts bring about nerve pain prodome
No

6). I can’t go to Dr to check be now it’s healed. Could a wart heal that fast? Do I wait til stgng else pops up? How contagious am I if these are warts?
It could, if you picked it all off and it was small to start with.

We believe that by the time someone has had five sexual partners in their lifetime, they have at least one type of HPV. The external genital wart variety is not dangerous and is only cosmetic.

Terri

[Terri Warren]

Genital warts are very common and you don’t even know for certain that that is what this is. And if it was a wart, it isn’t there anymore. I freeze off warts all day long. They are incredibly common. Of course, so is HSV 1.

Terri

[Confusedblossom]

So now what do I do?

Do I disclose to new partner? He already knows about ghsv1 now I add genital warts?

Am I still contagious even though warts are gone?

This could show up over a year after my other partner?

How often do these things recur? Am I always going to get them?

Does the virus ever leave my body or is it always there?

I don’t want to start googling this can you please give me as much information as you know.

I don’t know where to go from here.

[Terri Warren]

Do I disclose to new partner? He already knows about ghsv1 now I add genital warts?

That’s difficult to say, but yes, I would disclose. When did you start having sex with him?

Am I still contagious even though warts are gone?

There can still be virus on your skin even when a particular wart is gone.

This could show up over a year after my other partner?

That is unlikely – a more recent contact is more likely. And he doesn’t have to have visible warts to transmit to you.

How often do these things recur? Am I always going to get them?

That varies hugely form person to person . I don’t have an answer for you.

Does the virus ever leave my body or is it always there?

For most people, the virus clears, but not everyone

I don’t want to start googling this can you please give me as much information as you know.

I cannot be your only source of information about HPV, I am not comfortable in that role. The ashastd.org website is excellent to learn about HPV (warts). And I’m not even clear that’s what you have! It is one possibility of what you might have. You need to go back to your regular health care provider with these pictures and your body and deal with them on this one.

Terri

[Confusedblossom]

This new partner only had sex once two months ago.

Last sexual partner was sex about 7 occasions last encounter march of last year.

Before that ex husband of 20 years.

[Confusedblossom]

My new partner has only been with one woman in a marriage for 15 years and they have both been monogamous.

[Terri Warren]

I honestly don’t know. Maybe this isn’t even a wart. Please take your concerns to your healthcare provider. And the pictures, and see what they think. I can’t tell well from this distance.

We need to stop talking about this and stop now. You are panicking and we aren’t even certain this could be a wart and now that you’ve picked it off we can’t even be sure. All I’m saying is that a genital wart is a possibility of what might be going on here.

Terri

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