Jump to content

Help! I have to disclose soon and I'm not sure how/when and any new stats or treatments


Recommended Posts

IcantThinkofaName
Posted (edited)

I finally met someone who is wonderful and I feel like I'm in love. He also I think is feeling the same. And now I'm scared of losing him when I disclose.  I was thinking I'd get a few more dates in  and prolong that addictive high of being in love before I knock the wind out of his sails and  change the wonderful dynamic we have going on here right now.  It had been 2 years or  more since I'd had any pure bliss and warm fuzzy feelings or cuddling and kissing.  But things are progressing faster that I thought. He wants me to meet his kids and come visit him this weekend.

I am starting to act like an idiot, and say weird things like "maybe you should get to know me better and make sure you like me first" and he says he already does like me.  I am pretty sure he doesn't have any STds and they aren't even on his radar. He hasn't been with very many people.  He said he only has sex in committed relationships always, (probably for the very reason to not get any Stds).

I really wanted to slow this trainwreck down and enjoy the ride a little longer before disclosure but it seems inevitable that I am going to have to do it soon. My friends that know about my situation agree it needs to happen soon. I'm sad and scared.  I don't want to drop the bomb and annihilate this relationship and my happiness .I'm gonna cry so hard if he rejects me and I have a bad feeling that that is whats going to happen. Its taken me years to find this love feeling again and to find a worthy guy.  

Are there any new treatments or hope coming down the pike here, like relatively soon, that I can tell him ... so that there is some hope? Like a vaccine, a cure, a better treatment that makes shedding 0% and/or transmission 0%? Some new creams antibody creams? something to see if you are viral shedding ??? something??? anything??? 

How soon do you think one should tell someone about GHSV2? Obviously before sex occurs but, is there a best practice for this type of thing?

How should I break it to him?  Humor by asking if he likes blow jobs alot ? Sad  contraction story with crying? or  pure statistics?   I don't know what to say this time.

Are the transmission rates still 4% female to male, unprotected, with it going down to 2% using condoms or A/Vs and 1% with both?

 I've done it(disclosed) in the past but I wasn't as attached and in love with the others and I had less to lose. No one rejected me per say, but I can't say  sex things were normal like before I had HSV. I don't know how to break it to him or how to say it this time .  I am really in love and this one matters to me. I feel like its going to be bad. He seems so smitten with me. We've made all these future plans. I want to be in his future  and fulfill our plans. we have not been initmate other than kissing/cuddling. He is such a great guy. Why couldn''t he have shown up in my life 4.5 yrs ago before I got infected?

This ones gonna hurt bad if I'm rejected. I'm already crying.  I might not even go see him this weekend out of fear. I want my good feeling to last a little bit longer before its blown out of the water. And To pretend that I'm normal and not diseased . I just want love and happiness again. I don't want him to be afraid to touch me and always having the constant worry wondering if he is going to catch it ( if he accepts). I don't want to see the fear and hesitancy. He deserves better than to have to risk his health .

Why is there still not anything( cure/ vaccine) for us? why do I have to pay forever for some mistake who lied to me?😪

Any knowledge, ideas or advice here will be appreciated. Thank you.

Edited by IcantThinkofaName
Link to post
Share on other sites
On 5/28/2021 at 10:25 PM, IcantThinkofaName said:

I finally met someone who is wonderful and I feel like I'm in love. He also I think is feeling the same. And now I'm scared of losing him when I disclose.  I was thinking I'd get a few more dates in  and prolong that addictive high of being in love before I knock the wind out of his sails and  change the wonderful dynamic we have going on here right now.  It had been 2 years or  more since I'd had any pure bliss and warm fuzzy feelings or cuddling and kissing.  But things are progressing faster that I thought. He wants me to meet his kids and come visit him this weekend.

I am starting to act like an idiot, and say weird things like "maybe you should get to know me better and make sure you like me first" and he says he already does like me.  I am pretty sure he doesn't have any STds and they aren't even on his radar. He hasn't been with very many people.  He said he only has sex in committed relationships always, (probably for the very reason to not get any Stds).

I really wanted to slow this trainwreck down and enjoy the ride a little longer before disclosure but it seems inevitable that I am going to have to do it soon. My friends that know about my situation agree it needs to happen soon. I'm sad and scared.  I don't want to drop the bomb and annihilate this relationship and my happiness .I'm gonna cry so hard if he rejects me and I have a bad feeling that that is whats going to happen. Its taken me years to find this love feeling again and to find a worthy guy.  

Are there any new treatments or hope coming down the pike here, like relatively soon, that I can tell him ... so that there is some hope? Like a vaccine, a cure, a better treatment that makes shedding 0% and/or transmission 0%? Some new creams antibody creams? something to see if you are viral shedding ??? something??? anything??? 

How soon do you think one should tell someone about GHSV2? Obviously before sex occurs but, is there a best practice for this type of thing?

How should I break it to him?  Humor by asking if he likes blow jobs alot ? Sad  contraction story with crying? or  pure statistics?   I don't know what to say this time.

Are the transmission rates still 4% female to male, unprotected, with it going down to 2% using condoms or A/Vs and 1% with both?

 I've done it(disclosed) in the past but I wasn't as attached and in love with the others and I had less to lose. No one rejected me per say, but I can't say  sex things were normal like before I had HSV. I don't know how to break it to him or how to say it this time .  I am really in love and this one matters to me. I feel like its going to be bad. He seems so smitten with me. We've made all these future plans. I want to be in his future  and fulfill our plans. we have not been initmate other than kissing/cuddling. He is such a great guy. Why couldn''t he have shown up in my life 4.5 yrs ago before I got infected?

This ones gonna hurt bad if I'm rejected. I'm already crying.  I might not even go see him this weekend out of fear. I want my good feeling to last a little bit longer before its blown out of the water. And To pretend that I'm normal and not diseased . I just want love and happiness again. I don't want him to be afraid to touch me and always having the constant worry wondering if he is going to catch it ( if he accepts). I don't want to see the fear and hesitancy. He deserves better than to have to risk his health .

Why is there still not anything( cure/ vaccine) for us? why do I have to pay forever for some mistake who lied to me?😪

Any knowledge, ideas or advice here will be appreciated. Thank you.

Hi.... did you have the talk yet?  If not, let me just drop my 2 cents worth in here..... I absolutely understand your situation and the anxiety you are dealing with.... I, like many others on this site, have been in your shoes.  As soon as I found out I had HSV2, I figured it was all over for me in terms of meeting someone and sharing my life.  The depression of this perceived fact was debilitating.  I actually avoided situations where I might meet other "single and looking" people but, life doesn't work that way all the time.... which is good.  I went through two "talks" with potential partners that, despite my attempts to slow things down and put off the talk as long as possible, still happened.  One just stopped calling so, my fears were realized and it hurt like hell.  But, I survived.  The second was much more complicated.... at first the response was "no problem, no fear here.... we'll be careful..... we'll deal with it together...." and it was good for a few months before it became apparent our sex life was almost non-existent.... I then had a second "talk" to confront the situation and the answer that came back was "I'm just really scared of catching it...."  That was the end of that one.  I was extremely hurt, to put it mildly.  Lots of crying (by both of us) and ultimately this experience just reinforced my belief I would be alone.... I didn't want to try anymore.  But, I did, slowly.  I tried websites just for people with the virus, which had mixed results (clearly having the shared experience of having HSV is not enough to make a relationship work.... there are too many other variables that make people compatible!).  Ultimately, I met someone who, when I finally had the talk (the third time was easier, since I guess the practice of the first two made me a little more fearless), told me in a very matter-of-fact, honest manner, that this was nothing to worry about.... this time, based on something I read, I suggested he get an antibody test before we moved to the physical stage and before he made a decision about going forward with the relationship... and he did and much to my surprise, he was positive for the virus.... he had never had any symptoms so, he probably was exposed many years ago and never realized it.... but, the problem was solved.  I could not give him something he already had.  We've been together now for 13 years.  I realize this is not the way it goes for everyone.... but, since there are a lot of people out there that have HSV2 and don't realize it (either asymptomatic or simply have mild symptoms that they don't recognize as HSV) there is always a chance the person you meet may already be in the same situation as you.... it's worth suggesting getting the test before moving forward, it may put a lot of the anxiety to rest.  

As for new treatments/cures.... as you may know from the other subject matters discussed on this site, there are a number of vaccines being worked on that show great promise.... the cure is out there but, the down side is that it's going to take time.... we are talking several years.  For me, the one thing I keep holding out hope on is Pritelivir (google it if you're not already familiar).  It is not a cure but, studies so far show it is far more effective than just taking Valacylovir.  I believe it's now in Phase 3 trials and has received "Fast Track" and "Breakthrough Therapy" designations from the FDA which will help speed up its approval .... there are some reports saying it could be ready for the market in 2022 or 2023.  Again, the studies are very promising, enough so that some feel it's a "functional cure."  

So, ultimately, the best advice I can provide is simply to gather up all the strength you have and just calmly, and confidently explain the reality of the situation you find yourself in with this man.  Practice your talk in advance so you have a "script" to get you started.... do your best not to breakdown.... even if you really want to.  Be careful about going into this with thoughts of "trainwreck" and "disaster."  That level of negativity will definitely seep into your talk and only serve to make things more difficult.  Try going into the talk with the attitude that it's not that big of a deal especially if you can cite facts that lower any concerns he may have about transmission.  The bottom line is that this is not a risk-free situation and you have to accept that..... without putting too much of your sanity on the line over the whole thing.... it might work out great and it may not.  If it doesn't, remember, it is not the end of the world, even if it feels like it, I can assure you of that.  There is more to you than this virus.... he knows that already, and now you are just giving him the whole picture.  Don't let the virus component of you destroy all the other great things that make you, you.  Let us know how it goes.... I wish you the best!  (and sorry this is such rambling message.... too many "free thoughts" coming out of my head and onto the keyboard).

  • Like 1
Link to post
Share on other sites
IcantThinkofaName
Posted (edited)

@CHT

On 5/30/2021 at 12:18 PM, CHT said:

Let us know how it goes.... I wish you the best!  (and sorry this is such rambling message.... too many "free thoughts" coming out of my head and onto the keyboard).

Thank you so much for your answer. It was super helpful. I don't know much about Pritelivir at all. Ill look into it. Not sure my insurance will cover it  but anyway.... I really appreciate your long rambling  message in its entirety.🧡😃🧡

Edited by IcantThinkofaName
Link to post
Share on other sites
IcantThinkofaName

@CHT

SO I read up on Pritilevir ..its not even available  and it still doesn't cut transmission rates to 0% 😪

And then I found other facts I didn't know, that condoms only work/help at 65% female to male transmission . Thats depressing. How can the use of those cut transmission from 4% to 2% then??? where do they get that % from?

Is there any way to know /tell when we are viral shedding?

I am pretty sure I'm going to get rejected now. I have nothing hopeful to say to him. Who would want to deal with those odds.

I'm not feeling too good now. This guy is my dream guy. 

I'm thinking that when i get rejected I may do something terrible to myself... and I hate that.  Maybe I should stop and end things while I am ahead. I already love him though...😰😭

Link to post
Share on other sites

sorry you're feeling worse about the situation..... and apologies for not being clear about Pritelivir, it's in phase 3 trials and not ready for the market but, it could be available in next year or two.... I know, not much help for current situation!  And yes, it's not a cure but, it shows substantial decrease in outbreaks and shedding compared to valacyclovir.

There is no way to tell if you are shedding..... it decreases with time, particularly after your first year after diagnosis.... but, short of abstaining from sex during outbreaks (and immediately after they clear), currently the best options for cutting transmission are condoms and antiviral medication.  Combining these two makes for a marked decrease in chances of transmitting the virus.... that's still in your favor but, yes, it's not 0%.  So in addition to the 65% decrease in transmission using condoms, Valacyclovir offers this:

"Valacyclovir significantly reduced HSV-2 shedding during all days compared to placebo (mean 2.9% versus 13.5% of all days (), a 78% reduction). Valacyclovir significantly reduced subclinical HSV-2 shedding during all days compared to placebo (mean 2.4% versus 11.0% of all days (), a 78% reduction). However, 79% of subjects had no GH recurrences while receiving valacyclovir compared to 52% of subjects receiving placebo ()."

"Used effectively, condoms and medications such as valacyclovir, acyclovir and famciclovir can reduce the risk of female sexual partners developing herpes from an infected partner from 10% to 5% annually (men have a lower risk of contracting herpes from a female sexual partner)."

5%..... that's pretty damned good!... which is why many discordant couples never pass on the virus to each other.... focus on that statistic, please!  Put those other negative thoughts back on the shelf and close that door.  Rejection might happen, but, it might not...... just one way to find out.... and if it does happen, will you never try again?  Do you think you will feel that way forever?  What if a cure comes along in a few years?  There are a lot of "what ifs" for the future even if this relationship does not happen..... you owe it to yourself to think this through and approach the situation with optimism but, just as importantly, have a "backup plan" that includes not putting too much weight on all of this right now.... it's a complete cliche but, you need to take it one step at a time ..... cut yourself some slack now and in the near future..... breathe.  

  • Thanks 1
Link to post
Share on other sites
IcantThinkofaName
13 hours ago, CHT said:

Do you think you will feel that way forever?  What if a cure comes along in a few years?  There are a lot of "what ifs" for the future even if this relationship does not happen.....

 

I appreciate your kind words. I do. But...

What ifs are only what ifs. we've been speculating a cure will be available "within 10 years ", and sufferers have been saying this for 40 years + 

There is nothing close yet...and once there is ,there are  still years and years of FDA trials and approval. 

They can push thru a Covid19 vaccine in under a year  but they won't do it for HSV because it doesn't kill people. I am so angry about that.

I thought his risk was 1% with condoms and AVs but I am thinking its higher than that in reality.   5% is too high. I wouldn't date me with that stat. Sex will not be fun. It will be pure stress and worry and fear. It will be depressing.

So I have to take AVs daily again? doesn't that reduce one's overall antibodies? I've been doing pretty good just taking A/Vs for sympomatic outbreaks as needed bt of course I have not been dating or sexually active. When taking daily, I still got outbreaks, and, if I forgot a dose , that was an instant outbreak.

People with HIV aids get 0% transmission rates with their medications!  Its safer to have sex with an HIV + person!!!

I have no good news to tell him. I don't think I can disclose with out crying . I don't know how to spin this to make the sale. There is nothing appealing or hopeful.

 so 5% or 3% risk --How lucky does one feel?   It just takes one time and enough viral load.  

I am not a lucky person. case in point. I got my infection from my former  fiancée , who said he had been tested and had nothing.  He had no symptoms that I saw when I caught it.

I have waited years for this guy. This is the guy. He's high quality and  there are few and far between like this. BUt I am certain this is a dealbreaker. I am just bracing myself for heartbreak.

 

 

Link to post
Share on other sites
10 hours ago, IcantThinkofaName said:

 

I appreciate your kind words. I do. But...

What ifs are only what ifs. we've been speculating a cure will be available "within 10 years ", and sufferers have been saying this for 40 years + 

There is nothing close yet...and once there is ,there are  still years and years of FDA trials and approval. 

They can push thru a Covid19 vaccine in under a year  but they won't do it for HSV because it doesn't kill people. I am so angry about that.

I thought his risk was 1% with condoms and AVs but I am thinking its higher than that in reality.   5% is too high. I wouldn't date me with that stat. Sex will not be fun. It will be pure stress and worry and fear. It will be depressing.

So I have to take AVs daily again? doesn't that reduce one's overall antibodies? I've been doing pretty good just taking A/Vs for sympomatic outbreaks as needed bt of course I have not been dating or sexually active. When taking daily, I still got outbreaks, and, if I forgot a dose , that was an instant outbreak.

People with HIV aids get 0% transmission rates with their medications!  Its safer to have sex with an HIV + person!!!

I have no good news to tell him. I don't think I can disclose with out crying . I don't know how to spin this to make the sale. There is nothing appealing or hopeful.

 so 5% or 3% risk --How lucky does one feel?   It just takes one time and enough viral load.  

I am not a lucky person. case in point. I got my infection from my former  fiancée , who said he had been tested and had nothing.  He had no symptoms that I saw when I caught it.

I have waited years for this guy. This is the guy. He's high quality and  there are few and far between like this. BUt I am certain this is a dealbreaker. I am just bracing myself for heartbreak.

 

 

I can't argue with anything you've stated, you are spot on with the current state of the HSV "cure" situation.... we are years away.... and yes, even those taking HIV meds have a much lower chance of passing on that virus than we do.... it's sort of unbelievable when I think about how far medical science has advanced with that virus!  There are a variety of reasons HSV is tougher to solve than other viruses and I suspect that one of those reasons is that it is just not considered that serious of a condition...... for so many doctors, they consider it no more than a nuisance condition and write you a Rx for antivirals and send you on your way.  None the less, I'm still encouraged by some of the work being done by some researchers (Fred Hutch, Penn State) as well as a variety of pharmaceutical companies..... but, I'm not kidding myself either, it's not going to happen soon enough.

I won't feed you any more platitudes or pop-psychology approaches.... you know what you've got to do and I'm truly sorry that it is stressing you out so much.... I've been there and know how mentally exhausting this situation is!  It sucks, full stop.  You strike me as an intelligent person and therefore you will handle the "talk" well.... you've got your stats ( I still think 5% isn't so bad but, I get it, we all want 0%) and I suspect you've got a bit of a script ready.... then it's up to him.  It might be a deal-breaker as you mentioned, but, there's a chance it may not be.... how you handle the rejection option is what's important moving forward after the talk.  Just remember, even if he simply can't get around the virus issue, you are more than your virus..... we are all much more than our damned virus and fortunately, there are others out there that will discover this.... please remember that no matter what happens. 

When are you going to have the talk?  Remember, if he wants to "think it over" suggest he get a test to see if he might possibly already have been exposed at some point in his past and has the antibodies already.... a IgG test for HSV2 can determine this.  I wish you the best, really..... again, I know the stress and anxiety this brings with it.... but, please, just take my word for it, even if the outcome is negative, it is not the end of the world.... honestly.... you will come to know this.  Be honest, be brave.... it's going to be okay even if feels like it's not.  I know we don't know each other but, I'm thinking of you and pulling for you!  

  • Like 2
Link to post
Share on other sites
IcantThinkofaName

@CHT

Update:

I just won the herpes jackpot!!! I feel like the luckiest person in the world.

I started to have the talk and then stopped before the reveal,cuz I started to cry( and had had a few drinks ) telling him I'd tell him on Monday. Later in the evening however he guessed it.  I admitted it, and get this: He said he had it too!!!! WE are a match.

Unbelieveable. There is a God.   

Thank you so much for your counsel and wisdom  and positive thoughts ,CHT. I can't believe for once that I  feel lucky to have HSV and found my guy. 🧡 SOmetimes there is a silver lining or a rainbow  at the end of the storm. 

Link to post
Share on other sites

Well, there you have it!  Just awesome!  I'm so happy for you!  I wish you all the happiness that I know you deserve!  

  • Like 1
Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.



  • Donate

    If Honeycomb has helped you, please help us by making a donation so we can provide you with even better features and services.

  • The Hive is Thriving!

    • Total Topics
      71,807
    • Total Posts
      485,686
  • 0_unsure-if-it-is-herpes.png

    Nervous about dating with herpes? Skip "the talk" and browse profiles here.

  • Posts

    • CHT
      1.11 on the IgG test is still really low and could easily be a cross-reaction with the antibodies you have for HSV1..... based on all your data, it sure does not seem as though you have HSV2.... I'd relax and go with that....
    • CHT
      Hey Willily..... what would make you think you have HSV2?  Have you been tested?  Results?  The idea of getting it in the kidneys is unheard of (at least in my non-medical opinion)..... HSV2 tends to stay in the urogential area of the body and to a lesser degree can also be transmitted to the lips/mouth but, inside of an internal organ?  No.  
    • CHT
      Hey Lucy.... well, I guess getting much the same answer from the gyno specialist sort of puts the whole issue back into the category of "it's not likely HSV" you're dealing with down there..... and stick to the 1 gram of valacylovir (which I think is good advice).... did she pull any blood samples or did you bring the data you already have with you?  If I recall, your HSV2 antibodies level were very low, almost "borderline" thus giving more doubt that you may actually have HSV2.  Not sure why she would lean toward HSV2 and not HSV1 based solely on your IgG results..... So she thinks you have seborrheic dermatitis down there?  I've never heard of that but, that means nothing.... hopefully with the new medication, that will be under control in a few weeks or couple of months..... then it will be interesting to see if you have any sign of problems in that zone.... particularly if you stay with the valacylovir.    BTW, the full nude body exam must have come as a surprise!  LOL.  But, she was being extremely thorough I suppose.... better than rushing you in/out.   Oh, and to answer an earlier question, so far, it's been about 3 or 4 weeks back on 1 g/day of valacylovir.... and so far all clear!  It's not a record for me but, I am encouraged.  Also interesting to note that I've been dealing with a whopper of a stomach virus for last 5 days (fever, chills, aches, etc).... I thought for sure this would put too much pressure on my immune system and allow my HSV2 to reactivate but, fortunately, all clear, not even any prodrome.... but, I won't get too excited just yet, it can all change in a second!  
    • Fernie
      I’ve been diagnosed with hsv1 and have had some cold sores on the inside of my lips.  I’ve been diagnosed for some time with that. But around July 2020 I went in for an std panel and to my surprise my hsv2 IGG levels were equivocal.  My doctor at the time told me that I indefinitely had hsv2 although I’ve never had any symptoms.  This began a whole craze. I switched doctors and ordered another hsv2 test that also came back equivocal and was told that what the first doctor said was correct, that I do in fact have hsv2. The fact that I wasn’t testing positive and none of my past sexual partners tested positive led me to think I should keep getting tested to confirm whether I do or don’t have it.  So I went for the third test and it was .72 IGG which would be a negative. (Around July 2020 as well) I was still a little confused so I went for another a couple months later in October 2020, this hsv2 test was .89 IGG which is right under equivocal but still negative.  So armed with this data I went to a private doctor that I paid out of pocket for because I began to think that the Medicaid doctors might be wrong and maybe underpaid or whatever I dunno it just didn’t make sense. So I went to the private doctor and at the time I had what seemed to be like a small ingrown hair and I showed them and showed them my data. They said based off the ingrown hair that it was just an ingrown hair, and that the lab results were correct and that I had no hsv2 and that the prior doctors were wrong. The doctor said I should’ve never been tested because I never had any symptoms prior to that small ingrown hair.  So this made me happy but also made me lose faith in our healthcare system.  But just recently I went back for my 10 panel and on 6/9/2021 my hsv2 results were 1.11 IGG which indicates I am positive. This is driving me crazy and on a side note I noticed that my hsv1 IGG levels were both gradually going up as the hsv2 was creeping up. I dunno if there’s any correlation there but it’s just something I went back to look at out of curiosity because I do know I’m hsv1 positive.  At this point I just want to know if I am in fact hsv2 positive, what should I do? I want to get the western blot test because it’s supposedly the golden standard.   here are copies of my tests  https://ibb.co/Wskdtqs https://ibb.co/fGgjJxd https://ibb.co/HryKn8g
    • ohno35
      I'm sorry you're struggling to find answers; I feel like I'm in a similar place.  When I stopped worrying about the symptoms, they eventually went away completely after almost two years. Then, I did not experience any symptoms AT ALL for 2.5 years. In April I started worrying about the symptoms again, and they came back and are pretty much constant, as they were before. I know that it looks like it's *just* anxiety. But my gut is telling me there might be something else going on. I'm getting the WB done so I can finally rule out herpes completely.  I've been diagnosed with somatic symptom disorder, and I've wondered if it's not just anxiety about symptoms but hyperfocus on certain parts of my body that makes the nerves more sensitive and causes neurological-like issues. I've always struggled with hyperfocus and I've found I fit into the diagnostic criteria for Autism, ADHD, and OCD, but do not have enough of any of the symptoms to qualify for a diagnosis (though I have been misdiagnosed with 2/3 multiple times). The concept of Vulvodynia seems interesting because my understanding of it is that it results from hypersensitive nerves from a variety of initial causes. I wonder if hyperfocus on my vagina, vulva, and mouth is causing certain symptoms.  I definitely had extreme anxiety about herpes before my symptoms started, but I did have an outbreak on my mouth of something that seemed too long-lasting and blistery to just be a pimple, so I wonder if herpes or another related virus is involved too. I know I'm anxious, but I still know my body and I've never had anything on my mouth like that before, as far back as I can remember. I still have the scar from the huge blister almost five years later!!!!! Otherwise I would have been effectively gaslit by my doctors that it was a pimple and I was overreacting. It's possible though that I have had HSV-1 since childhood and had a rare herpes outbreak, but all the other symptoms are largely unrelated. I was hospitalized at age 4 for an extreme reaction to mono and possibly HSV-1, so I'll have to see if I can locate those hospital records. If I can confirm I was positive for HSV 1 at age 4 and also come up positive on the WB, I could still probably rule out my current symptoms being caused by herpes.  If my herpes WB is negative, I do wonder if another virus could be the culprit. I'm not sure if other things can cause blisters on the mouth, or if the oral blister and my other symptoms are unrelated. I know CMV is not out of the question. I know that hand, foot, and mouth disease was epidemic at my University at the time, so it could have caused the oral sore and maybe been an instigator for chronic pain? I've been reading about how certain infections can be catalysts for nerve pain, reactive arthritis, and so on for people with certain genes, autoimmune issues, high levels of stress, and/or other pre-existing risks. I've always had weird reactions to things despite being seemingly healthy, so that would not be out of the question.  We seem to have very similar symptoms, so I'll keep you updated on what I find! I'm getting blood drawn for the WB next week, and then I'll see what happens after that. 
×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.