Oral herpes??

[85chev]

I'll try to keep it short..I tested positive in 08..The doc said I was exposed to hsv 1 and 2 and that my levels were at 9??She pretty much embarrassed me by saying, "oh yea your numbers are through the roof!",you're having an infection right now!"..So I pretty much put my head down in shame and left..Well,in those 7 yrs I have only had a few break outs,mainly just mouth sores which Ive had all my life..In 2012 I severely injured myself racing mx and have had 7 surgeries so far..I had my worst outbreak last year while I was having bad rocacea,doc put me on acutane..She said(dermatoligist) the sores around my mouth were not herpes,said I had oil glands in lips and it was from that.I was on Accutane for 5 months and it all cleared up..My lips constantly burn and I have a red ring around my top lip ( vermllion border)that has gradually showed up in the last 4 yrs.. I've tried everything to get rid of the red line,it's embarrassing as hell ..Well I recently went back to a doc and they ran the hsv test again,and same thing my levels were at a 9,unusually high they said..Well long story short is,what is this ring around my lip?Every doc says it's not herpes..It's driving me nuts,I have never had anything in the genital area except when I was exposed..Any advice? It's bad enough I know I have hsv1 &2 but the red ring keeps me from looking people in the eye,I just look off or away never making eye contact..I may not have outbreaks with blisters but it's an everyday thing with my lips burning and being red (ring)..How do I know if I have hsv2 orally??One more thing,when I was infected my mouth was the first indicater,about 8 days after exposure the skin on inside of cheeks and lips started sluffing off!That's how I knew I was infected,went to doc and he prescribed famvir,it cleared it very quick,but that was 10 yrs ago when i was infecyed....I haven't found anyone that had symptoms like me,makes me wonder if I have some exotic strain,lol..Idk,it's driving me nuts though..Valtrex,acyclovir cream,abreva,all do nothing to help my lips..No matter what they burn and red ring never fades..I need help!!

[WCSDancer2010]

@85chev

 

Well, I'd say the red line isn't Herpes - never heard that at all. Sounds like a possible allergy to something you are eating, like Tomatoes or the like. I'd go to an allergist and see if they can test you for that.

 

It's HIGHLY unlikely you have HSV2 orally. Only 1% of all oral H is H2.

 

As for your results, I'm not convinced you have HSV2... and without a real description of the sores, I'm not convinced you have HSV1 either. The sores on the inside of the mouth were likely Canker sores, which are not Herpes.

 

I strongly suggest that you contact Westover Heights clinic and take their Western Blot test which will tell you for sure if you have HSV2, as well as HSV1... 40% of those who are asymptomatic (as you are genitally from what you say) who have a result under 3.5 have a False Positive. I'm not sure if you had a 9 or a .9 on those tests but I'm thinking it's very possible that it was a .9. Do you have copies of your results?

 

http://westoverheights.com/ (503) 226-6678 ... they can order the test for you through Quest Labs. It costs $5/minute for a consult … cheap IMO for clarity and/or peace of mind.

 

[85chev]

Thanks for the response!On the test I do not have the results as she called to give them to me.She and the previous doc (8 yrs earlier) both said the same thing ,my antibodies were at a level of 9,not .9...They both said that was unusually high..The main reason I think it's correct is when I was exposed,the series of events point to being infected..I've read that there will usually be an inflamed area and red spots at the point of introduction,I had all of this..I was informed by other people that the girl I slept with had just contacted it and she knew she had it but was giving it to every guy possible..Idk,it's all been a nightmare but being that it's been so many years now,I am dealing with it alot better,this sight helps! I am going to do exactly what ya say,I want to know for sure ,exactly what I have!!Not knowing keeps me in a bad place..I haven't had sex with anyone for 5yrs!

[2Legit2Quit]

I typed this up the other night, but apparently never hit Post, so here it is, but Dancer pretty much covered it.

 

Ok... First off... Your doctor is a f'ing idiot and deserves to be Sparta kicked into the small of her back, into the depth of hell... Maybe that was dramatic, but you get my drift.

 

I already know from the first two sentences, your test at this time, is irrelevant and she doesn't know Jack shit cause she put you in for the wrong types of test and just get response alone, screams "I'm a dumb ass!".

 

Let's just say for the sake of argument, that her test was accurate. I can assure you a value if 9 is far from through the roof, which further proves her stupidity. You need to go to Planned Parenthood and request for a type specific IgG Elisa test

[85chev]

Being that I've tested positive twice since the possible exposure is what leads to me thinking I do have both..First test was 3yrs after exposure and second test was recent with both docs saying my reading was at 9..The only indicator I have it in my mouth is the red ring around mouth..Everybody says that's not consistent with herpes..It burns constantly and only one time I broke out with sores along this red line,they looked like pimples until I popped them,then they just looked like sores,never any clear blister like fluid at all..I also felt really bad when they broke out..That was last year..Now I had a spot come up on bottom lip that looked like a pimple but it was really sensitive and felt like a paper cut or splinters..Started valtrex and within 2 days it went away,but still looks like a pimple. .All along the top lip where it is red has these pores that look like potential pimples (if that makes sense)..Also I've had a sore throat for a long time,when I started the valtrex I could feel it,like it was attacking whatever is in my throat,I also had a pretty good headache..A few days have passed and I feel better than I have in awhile,like the valtrex is making me feel better..Sorry so long but I'm just trying to figure this out as the doctors and dermatoligist I've seen have not been helpful at all!!I know my body and something is definately not right..I'm worried constantly and then that leads to depression...If I could just know exactly what I'm dealing g with,I could deal with it!!Thanks for yalls help!

[2Legit2Quit]

I hate the "it's not consistent w herpes" statement from people. People want to use textbook symptoms only and I can tell you, none of mine are text book. I think it sounds very possible that is from herpes, especially because it helps being in valtrex.

[Bamagirl91]

I am unsure of what strain I have. I have tested negative 2x from bloodwork but guess what. I know for a fact I have it. The red ring you are referring to sounds familiar. I also have a darkened area around my lips not as extreme as yours though. Kinda looks like I have applied lipliner. I also have a questions. Unfortunately I struggle with outbreaks that correlate with hormone changes such as monthly cycle. I have been suffering from this for a few years now but over the past six months or so I have noticed that I have VERY SMALL fluid filled blisters around my mouth and some in the corners of my eyes. They are not noticeable at this point to others. Is this just the dormant virus. These blisters do not grow in size or hurt at all. Unsure of what to do about it at this point. Im worried that the next outbreak I have will cover this entire area. Ive never had any ocular problems from it that I am aware of. I would give anything to have it like some others do who claim to only have an outbreak every now and then. I recently began started taking Valtrex, does it take time to build up in your system or should it work quickly?

[2Legit2Quit]

Don't k ow your story hun and not sure if your questions. Your post was a bit ambiguous w the details. Have you not gone to the doctors w the blisters around your eyes?

[Bamagirl91]

No, they have not caused any symptoms. Neither have the small ones around my mouth. When I say small I mean literally like I have to use a well lit area and get up close in the mirror to see them. I probably need to go I just am so embarrassed with my situation.

[2Legit2Quit]

Nothing to be embarrassed about. First off, you're making an assumption that what they are. Second, 90% of adults or close to it, have oral herpes world wide. Nothing new for them to see.

[WCSDancer2010]

I hate the "it's not consistent w herpes" statement from people. People want to use textbook symptoms only and I can tell you, none of mine are text book. I think it sounds very possible that is from herpes, especially because it helps being in valtrex.

 

While I agree, this particular symptom (red around the lips) is highly unlikely to have anything to do with H. 35 yrs with it and I've never heard of anyone at all with that.... again, sounds like an allergy or other issue

[WCSDancer2010]

I am unsure of what strain I have. I have tested negative 2x from bloodwork but guess what. I know for a fact I have it. The red ring you are referring to sounds familiar. I also have a darkened area around my lips not as extreme as yours though. Kinda looks like I have applied lipliner. I also have a questions. Unfortunately I struggle with outbreaks that correlate with hormone changes such as monthly cycle. I have been suffering from this for a few years now but over the past six months or so I have noticed that I have VERY SMALL fluid filled blisters around my mouth and some in the corners of my eyes. They are not noticeable at this point to others. Is this just the dormant virus. These blisters do not grow in size or hurt at all. Unsure of what to do about it at this point. Im worried that the next outbreak I have will cover this entire area. Ive never had any ocular problems from it that I am aware of. I would give anything to have it like some others do who claim to only have an outbreak every now and then. I recently began started taking Valtrex, does it take time to build up in your system or should it work quickly?

 

If you have tested negative twice and it's been at least 4 months between, then you are negative and odds are you have something else going on. But if you want to be certain, I'd suggest you do the Western Blot test. (Info below)

 

As for embarrassment - sounds like you believe you have it orally.... which means you are in with 80% of the population... 60% of young people have it by the time they are adults - I got it as a 4 yr old.

 

I suggest that you do a consult with the people at Westover Heights..... I don't really think you need to be on the anti-virals from what you describe, but the Dr's there are the best in the country and you will get great advice there :)

 

Westover Heights Clinic,http://westoverheights.com/ (503) 226-6678 ... they can order the test for you through Quest Labs. It costs $5/minute for a consult … cheap IMO for clarity and/or peace of mind.

 

 

[WCSDancer2010]

I am unsure of what strain I have. I have tested negative 2x from bloodwork but guess what. I know for a fact I have it. The red ring you are referring to sounds familiar. I also have a darkened area around my lips not as extreme as yours though. Kinda looks like I have applied lipliner. I also have a questions. Unfortunately I struggle with outbreaks that correlate with hormone changes such as monthly cycle. I have been suffering from this for a few years now but over the past six months or so I have noticed that I have VERY SMALL fluid filled blisters around my mouth and some in the corners of my eyes. They are not noticeable at this point to others. Is this just the dormant virus. These blisters do not grow in size or hurt at all. Unsure of what to do about it at this point. Im worried that the next outbreak I have will cover this entire area. Ive never had any ocular problems from it that I am aware of. I would give anything to have it like some others do who claim to only have an outbreak every now and then. I recently began started taking Valtrex, does it take time to build up in your system or should it work quickly?

 

If you have tested negative twice and it's been at least 4 months between, then you are negative and odds are you have something else going on. But if you want to be certain, I'd suggest you do the Western Blot test. (Info below)

 

As for embarrassment - sounds like you believe you have it orally.... which means you are in with 80% of the population... 60% of young people have it by the time they are adults - I got it as a 4 yr old.

 

I suggest that you do a consult with the people at Westover Heights..... I don't really think you need to be on the anti-virals from what you describe, but the Dr's there are the best in the country and you will get great advice there :)

 

Westover Heights Clinic,http://westoverheights.com/ (503) 226-6678 ... they can order the test for you through Quest Labs. It costs $5/minute for a consult … cheap IMO for clarity and/or peace of mind.

 

 

[2Legit2Quit]

Doctor's who have seen thousands, have never seen anyone w my issues from H. Anomalies always exist.

[85chev]

Ok,I called the doc and got the exact igg numbers,hsv 2 was 1.46,,,hsv 1 was 9.86...Judging by those numbers what do yall think?

[ihaveittoo]

Hello @85chev,

 

I would say you have HSV1 for sure. Its very possible the HSV2 result is a false positve. Anything below 3.5 has a 40% chance of being a false positive. If you want further clarification you can contact Westover Hieghts about a Western Blot. Contact info is above.

[85chev]

Cool thanks,I've heard the western blot test is like 250$,wonder if insurance covers it?

[2Legit2Quit]

So you have had a genital OB before?

.your oral herpes value is high, likely cause it's a very old infection. I've seen someone w a 42 for HSV 1, cause they've had it since childhood. How long ago do you think you were exposed to have 2? Btw, HSV 2 is the mouth is very inactive, if it even spreads there. It either breaks out once and then never again or doesn't at all. That value being a false positive, only applies if he's never had an OB, which he says he has; alas, I'd still get the western blot to be sure.

 

I don't think it's caused by herpes at all. A quick Google search turns up others experiencing rashes as well. I'm going to assume your skin is a lot dryer now, especially where the ring is. Start applying Vaseline or aquaphor to it, as others are saying heavy moisturizer made it go away.

 

 

[2Legit2Quit]

The western blot won't tell you where the infection is BTW . only swabs can tell you that.

[2Legit2Quit]

Btw. Why don't you take valtrex, like 1000mlgs for awhile daily and see if that helps or have you already tried that. You need to find another derm. When you can't get anders from a doc, you fure then and go elsewhere, especially when they're not willing to step outside their comfort zone and lokk elsewhere to find what's going on.

[85chev]

I think I was infected back in 04 when I slept with a girl unprotected on a 1 night stand..I had her friend calling me saying she has herpes,so about a week went by and I started feeling like I has the flu,I had just opened a bag of chips and noticed the lining of my mouth was peeling,then my mouth burned for about a week till I could get to the doc,he said it was to early to tell so he prescribed famvir for me and I could feel it making me better (if that makes sense)..One other thing is I read about what happens when infected and it said their would be a red dot by the opening of your pens and would be red,well mine was,maybe coincidence but idk..Well I really have only had cold sore twice,one time they were 3 on top lip,one right after the other but not at the same time..All along the red ring I have on edge of lip.They actually just were pimple looking bumps with a white head..I was put on Accutane for acne and rosacea for 5 months after that,dermatologist said she thinks it was acne but didn't test.the other time was recent,I have a spot on bottom lip that looked like one but never came up,now it's just a red spot that burns sometines..I've NEVER had any blisters in the genital area..My ex wife had cold sores when we met but she was so hot I didn't care,oh and I was young and didn't know any better..I've always got sores in my mouth since I was a kid,my sister gets them also..I also get these tiny red bumps that come up on my youngest that hurt but go away eventually..I've only been with 8 girls my whole life but some were questionable,lol..Right now the red ring around my mouth is driving me nuts,I've been to several docs and dermatologist and they all say they don't "think" it's herpes..I just want the ring gone,it's embarrassing as hell and annoying..Like today,my lips have been so dry all day,they burn too like they are chapped.I've tried EVERYTHING from creams to aquaphor to steroid cream to herpes med creams,nothing helps at all..I've taking valtrex and it makes the burning go away but the red ring remains..I also can't take the valtrex and viral meds consistently because I have bad migraines and they trigger them..I also was diagnosed in 05 with a auto immune disorder..I never went back to doc for that..It just frustrates me not knowing what to do or who to see next for the red ring around my mouth!!frustrating as hell..

[2Legit2Quit]

I would go see an endocrinologist or rheumatologist then, because I have autoimmune diseases and I can't control my HSV 2. I got HSV 1 at 22 from my ex husband, but my body handled that well. I only broke out inside my mouth and I never get cold sores on the outside of my mouth. That was before I had the autoimmune diseases.

 

Sometimes when you walk in telling a doc that you think xyz is from herpes, they immediately dismiss you. I had someone from another forum who had burning, tingltingling, leg weakness, crawling sensations and even a rash and was adamant he had herpes, despite tests saying negative. Rash was also on other parts of his body as well and had liver issues at 27 and a positive ANA, which is indicative of an autoimmune disease. I finally convinced him to see a neurologist and made him promise not to utter the word herpes, as he'd done that w other docs and they just blew him off and his symptoms were getting worse. This time they listened and found he has narrowing in his spine... Moral of the story is, when you come in w atypical symptoms of herpes, trying to convince a doc it's from herpes, they immediately label you a hypochondriac and won't invest any time trying to help you. So go to the rheumatologist, tell them everything you've mentioned here, especially about the autoimmune, but never mention H unless asked and just say yes, I was diagnosed.

[85chev]

Right on,yea I had a positive ANA test right after I was diagnosed with H..I went to a rheumatologist in dallas that is like the best in the country,he took 12 tubes of blood..The results freaked me out,I had 2 pages of "possible" stuff,all borderline elevated levels..They found osteoarthritis,a bone density test showed bone loss,also possible sarcoidosis, sacrealitis (spell?),also a high lipid content in my blood..I can't remember everything he found but he wanted me to be on plaquenil which comes with regular eye doc visits cause it can make ya go blind,well I never took it and I never went back to him,he wanted to see me back in a year..It's been 11 yrs since and I havent really had any issues other than a life changing accident racing dirtbikes,I had a bad spill and broke both ankles and knee..That was in 2012 and after 1 yr in wheelchair and 7 surgeries I'm walking...The line on my top lip was barely visible in just a short section in the middle of my lip until all this trauma and surgeries,now it's very pronounced and goes all the way across and is very visible..OK ,there is my life story,haha..Thanks for your help!!

[2Legit2Quit]

My friend has scarcodoisis as well. Well, that makes it sound more suspicious, the way you put it w symptoms flaring after events that would suppress your immune system. So you have a pic of this line, cause I can't imagine something that bad, that you're worrying like this? Lol.

[85chev]

Well,it looks like I have lip liner on and yes it bothers me..I swear I won't even look at people when I'm talking now..I just know they see it..