Bigtime nailed it - "it's important to know if we have HSV1 or even 2 because both can affect future partners..."
And since I enjoy giving oral I do want to know one way or the other. I can't fully give myself over to the experience out of fear of infecting someone ...and, if a lover is infected, who knows how they'll respond to the virus. They could be one of those who have horrible and frequent outbreaks! I would hate myself for doing that to someone.
Maybe, Fleetwood, this is such a bigger deal than in the past because of oral sex?
Also, if this is so common, why don't I see more folks with sores? I feel like I'm the only one.
Thank you both, Fleetwood and Bigtime. Wishing you both the very best. Keeping my fingers crossed for you, Bigtime!!!
Yes HSV1 is a risk, but one pretty much everyone on the planet faces. It is a ubiquitous virus that most don't know they have. I'm not sure why it is vital to know as most don't.
I can relate to this. I don't understand why the topic of people are infected with HSV, but never show a positive on a blood test isn't discussed more on here.
I have similar symptoms to the OB + genital symptoms..and all swabs and blood have been negative through 16 weeks as well. Just took a WesternBlot at 22 weeks, pending results.
Is it really possible that myself and RedPoppy will have to continue to deal with symptoms, doctor visits, and blood tests for months until we get a diagnosis, possibly a positive HSV1 one?
Fleet, it's important to know if we have HSV1 or even 2 because both can affect future partners. Especially, those who are or were negative to both types like myself. The danger is there of transmission with either type. That's why chasing a diagnosis is vital.
I wish you the best RedPoppy. I'm thousands of dollars deep in doctors, blood work, swabs, you name it and still I'm showing as negative for both HSV types yet have continued symptoms. The Western Blot is my last hope.
1. No this most likely is not a herpes lesion.
2. The tests are equally valid and negative.
3. It's not always a party crasher, but more often than not in an adult it is.
4. There is no way you could be sure you are producing HSV IgG without it showing up.
Do you think it is time to stop thinking about this? Most likely you do not have herpes. However you could easily worry yourself for years and finally test positive as HSV1 is tricky to detect in some people. Then what? You learn you have a virus that 60% of the population has that there is nothing you can do about or need to do about or let impact your life in any way.
Basically, I don't know what to do at this point. How does one trust the test results while symptoms continue?
What's your experience with hsv 1 like?
Hi Fleetwood, thanks again for your help and advice.
So, for the first time, I'm experiencing a rough patch of skin actually ON my lip. Feels like sandpaper that is tight and sort of heavy feeling and like something is stuck to it. Last week the area directly above it (the skin at the vermillion border) was itchy. I've applied some antibacterial and anti-fungal creams and the area above my lip is calm but the lip itself is now the issue. I was able to peel off some dry skin yesterday and today it feels much the same. Dry and flaky and heavy and tight.
1. Does any of this sound like herpes? Using a magnifying mirror I can see what looks to be a circular area but the skin irritation is otherwise fairly invisible to others. Does this sound like it could also be a fungal infection. Wouldn't my entire lip area be affected instead of just one spot?
2. It seems impossible that I have herpes/cold sores considering all the testing I've had done. Even had an immunoblot (not the Western Blot) done and was negative at 17 weeks past exposure. I've read that is slightly more sensitive to hsv1 - Can you confirm this?
3. Is it possible to still have it and yet still test negative on all these blood tests? I've seen you write that herpes is a "party crasher." But can someone have mild symptoms...even initially? Is it always a party crasher?
4. I'm pretty sure I produce the immunoglobulin needed for accurate testing but could the testing miss hsv1 so many time?
You've had a few swabs now and blood tests and nothing is pointing to HSV.
Continue to try to work out what the condition is.
Received my results from the CDC clinic - 16 week igg was negative for both hsv 1 and 2, .06 and .04. The pcr swab of the tender area on the roof of my mouth was also negative. Can I consider this conclusive even with atypical symptoms?
My thoughts are that, unless I'm one of those few who are igg deficient, I need to consider other causes for the sores that pop up around my lips. An appointment with yet another derm is scheduled for next week.
It really is crazy how so many things seem to mimic herpes! I'll admit, the high negative igm results plus what I thought were outbreaks really had me nervous.
Thank you again for your reassurance and timely advice.
Found this on another forum and thought it might be helpful.
"The Western Blot measures 14 peptides vs. the IgG test's 2 ... I've heard that the IgG test 97% accurate while the Western Blot is 99.9%. Sometimes the IgG test misses actual herpes infections that the Blot will find due to measuring more peptides...."
Also, what do titers actually represent? Antibody count, right? So, if hsv 1 titers of .10 or .07 are detected doesn't that mean the igg blood is actually finding something and the blood test isn't really "missing" the antibodies after all? Thanks!
Hi Fleetwood,
Had my 16 week igg blood test done at the CDC. Still waiting for the test results. Also had the roof of my mouth pcr swabbed. It was itchy and accompanied by the normal dull ache. The doctor said she could see a reddened area.
Curious about a few things:
Considering that the igg blood test miss HSV 1 10% of the time, If I take enough blood tests from different places (Labcorp, CDC, etc) won't one of the tests eventually, if the hsv 1 is present, detect the antibodies? When you say the tests miss 1 out of 10 infections what exactly does that mean? Are we just talking time and chance? Or is it, as you suggest, I might have a variant type of hsv 1 that will never be detected except by the WB?
Also, if I have HSV 1 when is oral sex without a condom OK. If I don't have anything going on around or in my mouth is it fine to kiss and perform oral? I really don't relish the idea of doing this with a condom - tried it and it was like chewing a rubber band. Bleh.
Lastly, some good news, the CDC will do the WB test for me! They said it takes about 2 - 3 weeks and costs around $250. So, for those out there wanting to order it but not wanting the hassle of ordering it and shipping it be sure to check into the local CDC.
Hey Fleetwood. You're right, it's good to have someone put everything in perspective. Thank you for your service here - it's invaluable.
Still, after reading that some folks take up to 6 months to seroconvert for hsv 1, I plan on testing one more time at the 6 month mark (two months from now) and move on. I really need to know one way or another. Darn that the Westernblot isn't the standard instead of the gold standard.
Best!
You have negative tests, blood and swab and no doctor is even considering that it may be herpes. Thus you need to consider yourself negative unless proven otherwise.
Only the WB has 99% accuracy for HSV1.
There's another approach. If you have it, there's naught you can do about it. You would also have one of the most common viruses known to man. You'd join 60% of the population with the oral variety alone. The best you can do is avoid contact when your lips or surrounds are not quite right.
Yep, the pcr swab test was the day I noticed the tiny sore. It came back negative. The sores come and go so quickly I had to jump on it asap.
Saw a dermatologist recently who didn't think the diagnosis of perioral dermatitis was accurate. But he offered no suggestions except maybe seborrhea dermatitis around the mouth...just overactive skin??? So I feel like I'm back to the starting point and that ol feeling of anxiety is, once again, starting to haunt me.
So, how would you proceed? Even though my 15 week igg blood test was negative, shall I assume that I have hsv just to be on the safe side especially considering the, albeit atypical, symptoms? How can, unless one pays for the Westernblot, anyone have real confidence in the blood test when it comes to hsv1? Could I be igg deficient?
Is there a test that comes close to the Westernblot in accuracy? Does the CDC offer a fairly accurate one? What is an igg essay test?
As to my partner, he has tested negative on all his tests as have I and he did get the igg blood tests too. Btw, I'm sure you already realize this, but he is not the same dude I kissed 16 weeks ago. And, even though I just "kissed," that seemingly innocent event has sent my life in a tailspin. Crazy humans that we are. :)
Anyway, I really appreciate your perspective! Thanks again, Fleetwood.
If we are talking a PCR test then it is extremely sensitive and will detect microscopic amounts of the virus. The issue is whether you caught the virus in time as the sore was developing as it does go away quickly at times. The little blister things are a good source though.
Yes I left out the HSV1 above when mentioning detecting a HSV1 infection. 10% of infections are missed. A Westernblot will detect 99%. Why? I dint think anyone knows. I suspect though that the virus seems a bit more complex and has more underlying strains than HSV2. Also your body produces up to 100 different defenses to HSV and IgG antibodies are only one of them.
If your partner has never tested then he is not technically clear at all. There is an even chance he already has HSV1 which means the odds of further infection for him are negligible. If I were him, I'd certainly treat you nicely today and see what happens tonight!
To be honest though, I think you should both get fully tested such that you can approach unprotected sex with confidence.
Thank you Fleetwood. Your response brought me enough peace of mind to treat my partner to a little oral fun! So we both thank you. :)
And, to that point, honestly, I don't worry so much about personally coping with this condition going forward but more about spreading it to a loved one via kissing and oral sex.
Just a couple more questions:
Do you know how much "sample" of a sore is needed for an accurate pcr swab? I've had conflicting responses from doctors.
Also, I've read that the igg type specific tests are designed to identify hsv 2 and not so sensitive when it comes to hsv 1. Is this true? If so, why is hsv 1 trickier to detect?
If I can get an immunoblot test would this be better than an igg type specific blood test? Is this test more sensitive for hsv 1. I hope to order the WB and see what it says about my status and to truly put this behind me.
No, haven't been tested for staph yet. Are you suggesting a strep/impetigo condition? I do seem to have an increase in acne (neck and forehead) in addition to these other symptoms. Also, I've been tested for all the other stds. All negative.
Again, thank you for your response!
Suggesting a few answers:
1. No impact on the test.
2. I really doubt these particular symptoms are herpes related.
3. Its conclusive, it takes most people only a matter of weeks to produced antibodies. Extremely few seroconvert after 15 weeks.
4. 5. 99.9% of infected people produce IgG antibodies maybe more. A Westernblot will pick up 99% or more of people with antibodies. The IgM is of little relevance beyond 6 weeks of infection and probably sooner. Commercial tests have a lower reliability level picking up,maybe 90% of infections.
6. Yes a good chance something has infected you. I take it you have been tested for all forms of bacteria (strep/staph)?