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Seriously confused


phoenix79

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Hi,

OK, here I go. I know I have HSV-2 genitally. Have had it for over 3 yrs. No sign of oral herpes, and no HSV-1 antibodies in my blood. About 6 months ago, I had a little lesion on my lip, it swelled up, then it immediately went down. Then it turned into a little cut. Then it turned into a little blister, and it hurt. It only lasted about 2 days. It went away, then my tongue became white and I had some sores on my tongue. Then it was followed by about a weeks worth of tingly and itchy face. I have been blood tested again, (6 months out) and still no HSV-1 antibodies. I did not get it swabbed because it came and went so quickly. My lip throbs in that spot occasionally.

My doctor, and a herpes expert on other forums doubt this incident was herpes. Mostly due to the fact that it is highly unlikely to autoinnoculate following your primary outbreak.

Does anyone who has had something swabbed, and know they have oral herpes for sure relate to my experience? I am trying really really hard to believe these doctors, (my doctor is really great), and especially the herpes expert, but i just don't know what else that issue could have been.

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Herpes is such a chameleon. It can resemble many other conditions, and vice versa.

I would also consider angular chelitis as a possible explanation of your mouth symptoms.

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Thank you. You have responded to a few other of my posts.

I'm the one who had my hand in my lip (before I though it was herpes) then moved it while plucking my eyebrows to get another angle. I have been having serious pain in that spot, on the upper left side of my cheekbone by my eye. And pain in and around my left eye. I feel like I am going crazy. I have been to a few doctors, and all say it is not herpes, but I also have not come off the antivirals. I know auto inoculation is unlikely. But the symptoms are unbelievable. Throbbing pain, stinging in my eye, feeling like something was pressing against my eye. Pressure on my face, serious pressure. Tingling, burning, achy, itchy, twitchy. It has been non stop now between all those symptoms for months. And sometimes the throbbing of my lip would happen in unison with the throbbing of the side of my face. I'm so scared. I'm so tired of being in pain, and not knowing the source. My logical brain, (and several doctors) tell me it is not herpes. But the way I feel tells me otherwise. I've never felt so horrible in my entire life. I'm crying all the time. Medicating for pain, and depression. Nothing seems to help.

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Gosh, that's just awful. The eye stuff is scary, no doubt. And of course, you are in a lot of discomfort, clearly.

I'm just assuming you have been to an opthalmologist?

Everything I've ever seen has said that ocular herpes is very obvious and can be clearly diagnosed, unlike other locations.

Have any of the docs suggested other possible causes for your symptoms?

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I have been to my GP, an optometrist, and opthamologist, an ENT, and now a chiropractor. My eye pressure is fine and there is no sign of ocular herpes. No sign of any facial lesions. But like I said, I have not come off of anti-virals. Everyone thinks I am crazy and I am beginning to feel that way. My GP says there is no way I would have been feeling that throbbing pain while on anti-virals. The herpes expert forum I paid to post on, the doc has over 30 yrs experience in the field and says he doubts it is herpes. But he also said he doubted the lip incident was herpes. Everyone says it is not what I think it is, but have no other explanation. My chiropractor was the first one to give me anything. She suggested Trigeminal neuralgia. An inflamation of the 5th cranial nerve. Many of my symptoms are similar, but i am not experiencing the electricity like feeling sufferer's detail. It is just too coincidental that the throbbing pain is in the exact spot where my hand was planted for quite some time. I'm trying to listen to the doctors and unconvince myself it is herpes, but I can't.

I don't know if I will ever be able to forgive myself if I really have done this to myself. I was OK with my GHSV. Coping just fine. But this is too much. I am not even myself anymore. I'm a miserable mess of a person. How will anyone ever want me? I'm only 31.

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I don't know if I will ever be able to forgive myself if I really have done this to myself. I was OK with my GHSV. Coping just fine. But this is too much. I am not even myself anymore. I'm a miserable mess of a person. How will anyone ever want me? I'm only 31.

Whether you do or don't have ocular herpes, how can you blame yourself for that? You had no idea at first that you had it.

I hope you can start to deal better with the emotional aspects. Herpes does not have to be a deal breaker for relationships, but the emotional stuff certainly could be.

Besides, all this stress is not good for you, obviously.

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I hope I can start to deal better too. Ocular, facial, who knows what I have or have not done. I know if I can't get a grip, it will seriously effect my life and my relationships (or lack there of). At this point, I feel like it is taking over my life.

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I hope I can start to deal better too. Ocular, facial, who knows what I have or have not done. I know if I can't get a grip, it will seriously effect my life and my relationships (or lack there of). At this point, I feel like it is taking over my life.

It sure sounds like it is taking over your life. I know you said you are on medications. How about therapy? I didn't used to believe in that, but I found a few years ago that it helped me get "unstuck" from a sad situation. Didn't really take much, just a little hand and then I was able to do the rest on my own.

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I have gone for therapy. Only 1 session so far. Talking was good. But he basically told me the symptoms are in my head. Now, I know I need help, that is why I took that step. But my symptoms are very real. I'm aware that it is very possible that I am attributing them to an inaccurate cause, (herpes), and possibly even making them worse by means of anxiety, but they do exist. I need help with letting go of herpes as the cause, I CANNOT get it out of my head. And I need help accepting that if I have it now facially, I did it to myself. The only way to prove this, is for my to go off of anti-virals and see what pops up, and or, finding another cause. Unfortunately neither is too promising for me. I am scared to come of the anti-virals, (because of my face, not downstairs), how backwards is that? I need to see a neurologist and have an MRI done. But I have no health insurance, and don't have a few extra grand hanging around. I'm at a loss here, and my head won't stop pounding.

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  • 4 weeks later...

Phoenix,

i have been experiencing very similar symptoms in my face and both eyes. (and on my face around the left side of my mouth) i have a similar type of reason for thinking its herpes - one thing led to another in a paricular order and it just seems to make sense to me (it started with a huge bump on my tongue, tho. and like you i CANT get it out of my head that its herpes.

but yea, the symptoms you describe are very similar to what ive experienced. those symptoms wont go away either. it started out as itching and now its mostly pain. i get a "throbbing" feeling in my eyelids. not just a feeling, but literally those little muscle spasms everyone gets on their eyelids once in a while, but much more pronounced. sometimes that throbbing will last on and off for hours. it really is wierd.

i dont have any visible symptoms, no redness either or sensitivity to light. but my eyes (my whole face) is unusually sensitive to cold, (temperature extremes in general) and i have frequent headaches. it feels like some sort of wierd head cold - i guess.

i haven't seen a doctor yet (no insurance) and im not sure what to do either, but this website is def. the best online resource i can find. its frustrating tho because even as extensive as this site is for this topic, there is still very little about ocular/eye herpes. but my symptoms wont go away and have continued to worsen. im def not making this up! please post if you have any updates about your condition.

even if you dont have any updates still post something if you like. it would be good to talk to someone with similar symptoms. there arent too many people on here that have described

those symptoms.

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Hi Undefeated,

I've been meaning to write, sorry it has taken so long. Sorry to hear you can relate, I'm in hell. I wish I had any kind of update, but not much has changed. I did go off of the anti-virals. One day I got out of the shower, and noticed these tiny blisters under both of my eyes right along the lower lid. I flipped. Ran to my eye doc and was told it was just an allergic reaction. Went to an opthamologist and was told the same. (Dropping lots of money, and feeling and looking a little whacko). I decided to go off the anti-virals then and see what happened. I figured if it was going to come out then was the time. The tiny blisters did go away, I kept a very close eye to watch if they changed or anything. They didn't, they were never red and never had fluid. I guess they really were an unfortunate form of allergy that only fueled my anxiety, which I have never before experienced.

I have not been taking anti-virals for about a month or so now. The throbbing pain has mostly passed, (that stopped when I was still on drugs). It was debilitating. I still ache, itch, twitch. Nothing visible. Constant discomfort and pain though. My eyelids get the same thing you wrote.

My chiropractor, and now a neurologist I have spoken with both think I have Trigeminal Neuralgia. It is also known as the suicide disease. Awesome. I am going to go get an MRI (on a payment plan based on income through the University system). This is a process however. I'm trying to be positive, TN, is cureable. I fear nothing will be found, and I will have spent all this time and money to find out what I already know in my gut, that it is Herpes. At this point, I just want the pain to stop. I want my life back. G herpes is no walk in the park, but it was completely manageable and did not affect my daily life the way this pain is now. I'm miserable, and full of fear, anxiety, and questions.

What happened for you to believe you have done similar?

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      Hey @WilsoInAus ok thank you, I will do my best to move on and stop trawling forums haha. 
    • WilsoInAus
      Hey @sgt98 but there is no feasible infection or outbreak to suppress and antivirals do not suppress an initial outbreak in any event 
    • sgt98
      Thanks @WilsoInAus I understand apologies for this but the only other thing I am worried about is that I did take a course of Famvir on day 1 as I felt like I was having an outbreak of cold sores and am worried that has suppressed the initial outbreak genitally 
    • WilsoInAus
      Hi @sgt98 it is not feasible to obtain a HSV-2 infection from receiving oral sex - only HSV-1 is feasible but you've already got that and immunity from any further infection with HSV-1. You do not need any further tests for HSV. You're feeling regret, try to forgive yourself and calm down, let the rational take over. You know the answer here and it won't be long until you believe it too.
    • WilsoInAus
      Hi @NerdP423 and welcome to the website. You raise a lot of points and I think the best way to address your concerns is add some comments at each key point. I've copied your note again below and added these comments in square brackets. I appreciate any insight (even speculation) as to what has been going on with me. I'm a 37y/o M. I last was intimate with a new partner on 2/11/2022, and a few days later started having a huge amount of discomfort in my face. [The first thing that happens though is that herpes causes lesions or at least some skin based disruption. Other symptoms are then related to the actions of the immune system responding to the virus. Without lesions, it is highly questionable that the ailment is related to herpes, yet testing is useful if you have concerns as you have done so.] About a month after that [herpes causes issues within days, if the first 'symptoms' are a month later - its extremely unlikely they are related to herpes], significant discomfort downstairs, however every test I have ever taken for HSV 1 and 2 has been negative. Here are the details: Face: Previously, some significant tingling and itching on the right side of my mouth, lips and chin (still there, but milder) [herpes does not cause general tingling and itching, it can cause a reasonably concentrated feeling of itch/throb from which a herpes lesion appears within hours]. Occasional hot flashes near my right eye, cheek and ear [herpes does not do this, it may be a immune response to something, or stress]. Sometimes it will feel like the skin is crawling on the right side of my face [herpes does not cause a general crawling sensation]. Never seen anything that looked like a traditional cold sore [that's extremely telling, even people with associated atypical symptoms will have experienced herpes lesions]. Occasionally, the left side of my face will have a momentary feeling of skin crawling, but it's so mild that I am not really worried about it. Downstairs: Thankfully, most of these are now milder than they were before. Occasional momentary pinch of pain at the base of my genitals. [herpes does not cause a general pinch feeling.] Aching pain in my boxer area (groin, leg folds) [nor this] Occasional feeling of cold in my boxer area, butt, or lower back. ( also in my shins and occasionally even my arms) [nor this] On 4/30/2022, I had been in discomfort for almost two months. I scratched an itch, noticed it hurt, and then checked - I did have an open ulcer down there. Took myself to the ER to get swabbed, came back negative. 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I was taking the Arganine to see if I could induce an outbreak. [This is irrelevant, there is no known linkage between herpes outbreaks and arginine/lysine intake - its a myth - and B12 infers nothing.] I think what I am asking is - has anyone here ever repeatedly tested negative over and over again over long period of time, before getting a definitive answer, be a positive test, or something else? [The answer to this is: Extremely few people with a HSV-1 infection and even more rarely HSV-2 test repeatedly negative on Westernblot and actually carry the virus. 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There are hundreds if not more than a thousand experiences on this website alone that are similar to yours that are truly negative for herpes I'm one of them!]  
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