So here goes...As I am writing this so many things are going through my mind about where do I even begin. In Dec. of 2013 I was intimate with someone whom I have known for years. Although we are not together we share a child and he lives in a different city. About a week to 10 days after we got "together" I started feeling a weird tingly feeling in my private area, then the tingle turned into a painful, sensitive to the touch kind of thing. This went on for over 2 to 3 weeks. Then all of a sudden it stopped. I could not afford to health insurance at the time so of course I did what everyone does now a days instead. I looked up my symptoms online and everything I read led me to believe it was H. But I was in denial and since it went away It was easier for me to forget about it. Then in May of 2014 I noticed a very slight bump down there that almost felt like a pimple but did not hurt or anything so I kept checking everyday and this time it would not go away...I finally went to PP and had the PA I believe do a visual test, she did and told me that what I had was nothing and that I would know If I had H because it would be very visible and made it sound like it had to be crusty and oozing or something to that affect. She reassured me that I had nothing to worry about. So I left feeling good but still had that nagging feeling in the back of my mind that I needed to be tested more...but since I had no other physical symptoms I just let it be. Then in May of 2015 I started feeling the tingles and sore pain and all the feelings I had in Dec. 2013. I made an appointment to see my Dr. and I told her everything. She then had me tested and the results came back and lo and behold I was positive for HSV 1. She told me it wasn't that big of a deal and that over 80 % of people have it. (In my mind I was like "well it may not be a big deal to you because you most likely don't know what it feels like to have H.) I was so devastated even though I probably knew all along. I have been so down and depressed since then. I'm in tears as I'm writing because I just feel so disgusted with myself and feel really alone. I cannot tell my friends or family and feel hopeless. I have not been able to talk to the person that I think gave me this he is ignoring any attempt at communication. I am so pissed at him, I don't know if he knowingly gave me this and I feel so angry. My symptoms since it came back in May have been constant! I do not get sores or anything except for that bump but it is mostly the tingly, crawly feeling and I am so over it!! I have tried L-lysine and my Dr. put me on Vacyclovir 400 mg 2x per day for ten days but I know I need suppressive therapy because this has been ongoing for now 6 mos. especially around my period it is the worst. I feel like my down there will never be the same and while we're on that, my up there(mind) will never be either. I am writing this because I feel like maybe this is the first step to finally getting some help and finding a way to deal with this and move on. Please give me some advice, I am open to anything.
I'm sorry honey, but do know that this is normal to feel this way w the diagnosis. Because it is HSV 1, you contracted it through oral sex and he likely didn't know. There are times we have asymptomatic shedding and some people are always asymptomatic and you are contagious during those shedding periods
Understand that this is going to be a grieving process, but you will come to a place of acceptance. This is no different than soneone who gets cold sores on their mouth. Give the meda time to work. I understand, I had constant nonstop paresthesia too for 8 mo the after I got it and I still have a tickle and itch a couple times a day to this day. U used to have constant crawling sensations and that's the absolute worst feeling. When those get under control for you, I think you will start to realize that H really changes NOTHING in your life, except a disclosure talk. Would you be devastated like this getting cold sores on your mouth? Remember, it's important to keep H in perspective and give yourself time and rokn to heal and grieve, just don't stay there. Keep your head up.
Thank you for responding, it makes things a little easier to know that there are other people who know what I am going through. Can you share with me some of the things that have worked for you? I just feel like a leper because I have "prodromes" it seems like all the time. There are days when I feel ok because its not there but other than that the constant tingly and crawly feeling makes it hard for me to come to terms with what I have. I am confused because from what I have read, HSV is supposed to occur less in those with type 1 but it seems like for me I will always have this prodromal bs and it really just leaves me drained emotionally. I am trying but it is hard.
@sassytiger I am in the same boat. There are other people on here too that are
Hang in...over time (maybe more time than others) you should get better.
Try taking vitamin supplements and probiotics and eat well. Take ur antivirals and then just wait it out.
But definitely emotional acceptance of h and your overall emotional health is drained bc of constant physical symptoms...I definitely hear that.
Hugs
Xo
@whitedaisies I am so grateful for this site. There is so much support and great information given by the moderators. It is such a breath of fresh air to come and feel accepted and understood. Thank you for you advice, I will look into supplements and probiotics.
Are you on birth control by chance?
Actually I was on Mirena but In May of 2015 I had it removed as it was time since it has a 5 yr limit.
I actually am not sure if what I am feeling is the effect of what I have read to be post herpetic neuralgia because my nerves may have been fried from the primary ob or if it is prodromal. This is what makes it so difficult to deal what is happening to me. Plus I feel anxious and always paranoid that if I am constantly shedding, am I contagious all the time??? Have I unknowingly passed it on to others and then I feel so overwhelmed and guilty,uggghhh! I feel ridiculous asking these questions and just when I think things will be ok then, BAM, I start getting these sensations! What a roller coaster!
P.S. Thank you both @whitedaisies and @2Legit, your support means a lot and the hugs are so soothing :)
I know exactly how youfeel!!! Exactly.
You are not contagious all the time. I had two sexual partners post h and they didn't get it from me. I still had weird symptoms going on and honestly I just had to hold my breath and go for it. I wasn't going to not have sex forever. I told my partners my symptoms were frequent and they were really compassionate and just went for it.
You will get to that place too.
I know it's horrible but the option is abstinence and I did it for a while and it's not fun. You will learn to relax in time.
Hugs
I too have wondered the same thing, because I had constant paresthesia too. It's hard to tell the difference between the two. If it's paresthesia or is it prodrome. This is one of many reason's I am not dating.
Would you say these symptoms started up after coming off bc?
Yeah as far as dating, it is the last thing on my mind because I one am not ready to have the conversation with anyone regarding h and the other thing is I just don't feel at this time I am in a healthy place mentally. I am still learning how to cope and deal with all of it.
With the bc I do believe that my symptoms may have had something to do with the fact that I was taken off Mirena. I understand that stress is a huge factor and because I feel like if I talk about how and why and all that, I would never stop writing. Around this time I also lost my job and my vehicle caught on fire! yes all within the same week! I was out of work for a while and dealing with the stresses of being unemployed was taking its toll on me.
As far as antivirals, I was prescribed vacyclovir twice already but I found that it really did not help. Both times I took it for over 10 days. I have a doctor's appt. in a few weeks and I hope to ask her if I can be put on something else i.e. famvir or valtrex and this time I want to be on suppressive therapy. The parasthesia has been ongoing for over 6 months and I wonder if I will ever be at a point where it is completely gone??
I have heard and read that taking a low dosage antidepressant may help with the parasthesia. Do either of you know of anything about that?
The antidepressants never helped me.
Only thing would be nerve pain meds, suppressive antiviral therapy, reduce stress, and take vitamin supplements. I hope sthng works for you.
@SassyTiger62
Hello and Welcome!
So - I have to keep this short - I'm just popping in to check on things (I'm known as the Forum Mom here) but I'm out of town dealing with my 87 yr old father... so my reply is going to be short. But as a 35+ year veteran, who has oral HSV1 and genital HSV2, I can tell you that the virus eventually ends up being a nuisance for the VAST majority of people (unfortunately @whitedaisies and @2legit2quit are some of the rare folks who have other issues complicating and exacerbating their Herpes issues).
So some homework for you until I can jump back in (I'm going to be somewhat MIA for another week)... read the following links/watch videos, etc. Hopefully they can put some perspective on things for you ... and I'll try to keep an eye out for you and will try to pitch in more later when I can catch my breath!
(((HUGS)))
Handouts + disclosure e-book:
https://www.herpesopportunity.com/lp/ebook
http://projectaccept.org/who-gets-hsv/
great tips for newbies
Herpes facts video
Thank you Dancer, I will def do that!
Here we have another case of GHSV1 doing things it cant do according to Dr's. Hopefully they will wake up and realize there are people with horribly annoying atypical symptoms due to GHSV1. I know I'm one of them.
Hang in there, keep on the anti virals and vitamins, get some vitamins good for nerve issues and healing nerve damage. It might help a bit.
@williteverstop
Can you imagine how many people out there are going through this experience and afraid to speak out?? It sucks to be a part of this "club" but I am thankful for the advice and positive reassurance from everyone on this site.
You use the word "forever" in your title, but how do you know how you will feel about this in the future? Most people I know who have it were surprised when they first found out but don't give a fuck about it after some time has passed.
@hippyherpy
and your point? If I am not mistaken I have a right to feel however way I want about this. As far as other the "most" people you know and how they do not care after time has passed, THAT is how they choose to deal. Do me a favor, if you do not have anything productive to pass on, then let others who have compassion and some sense dole out advice. You do not know me and what I have gone through, I did not come on this site to be attacked and judged, so in case you did not realize...how about you think about what you have typed in the comment section before you click post comment. Have a great day.
@sassytiger62
Since dancer is off line dealing witht her dad, I felt I had to step in here. I don't think @hippyherpy was stepping out of line.
He's just trying to give you some hope. This too shall pass. He was not judging or attacking.
Yes...constant symptoms make it feel horrible. Trust me I am there. You are emotionally exhausted. I totally get it. Please be kind. We are all here for you with different levels of advice and support.
Take care
@sassytiger62 playing devil's advocate here and someone who was triggered by @hippyherpy in the past when he first came on, due to his wording; I can tell you that he wasn't intentionally trying to hurt your feelings or attack you, he just lacks couth and doesn't realize how he can come off at times. so take it from me, he wasn't trying to attack you. He just communicates differently and can come off brash. W that said, I can understand how it sounded reading it when you're already emotionally charged, because i too cringed reading it w out emotion, so during a devastating period for you, I can understand this being a trigger for you. Just relax, deep breath and take this one day at a time. He was trying to show you to keep things into perspective and using the word forever over something he doesn't see as a big deal, is something you won't feel is a big deal in the future. He doesn't want you to commit yourself to thinking that this is how it will be forever, because you will process all these emotions at some point and reach acceptance. You'll be OK darling. Hugs
Obviously I'm super emotional and my feelings are all over the place, if I came off as defensive please understand that I am still trying to process everything. I did go back and re-read the comments made by @hippyherpy and I can see how he and everyone else who has replied was trying to make me see how in my own time I will be able to get a handle on this and realize that while it seems hard to believe, that over time it will get better. I am sorry for being over reactive, please know that I am sincere...my reaction to his comments have more to do with me being angry with myself still and trying to learn to accept everything. I am trying to tackle the physical symptoms its clearly obvious to me that I have to deal with emotional acceptance as well.
We know that. Hugs sweetie. I had to go to therapy bc the constant stmptoms just got me depressed. Trust me. I feel for you and I wish I could do sthng to help.
@sassytiger62 no need to explain yourself. It was a legit emotion to feel that way, as he's a little rough around the edges at time, but he was being genuine in what he said, he just hasn't perfected the way he communicates his thoughts in an empathetic manner yet. He very much so approaches things w out emotion and like sto stick to the facts and doesn't involve a lot of emotion into it, whereas a female, connects everything to emotion, so don't feel bad. He just doesn't know how to convey himself to you, in our language so to speak being a female. He's thinking only of the logical spectrum and tries to approach this w out emotion. He was telling you the same thing we want to, but w out the empathy and emotion. He I thinkthink, from what I've learned fron his posts, likes to stick to things that can be proven in black and white, rather than a an area that is frayz which emotion is a gray area most of the time.
Nioez I feel your feelings are justified, just based on how it coukd sound. My stance on this, is just to show you that he can sound a certain way and not mean even close to how he came off. This is soenthmore I'm still learning myself... To not take things personally. It's not an easy task and is hard to not let people trigger you... So don't feel bad. I understand the place you are coming from completely.
I am so loving how people are learning how to support/coach each other on here.... thanks everyone ... much of what has been said is pretty much what I would have said...one thing I tell people a lot (and not just those with H) is to learn to not take what people say personally .... and H gives us the opportunity to really work on what is important in our lives and gain perspective... IF we choose to look at the lesson and learn from it...
Well done everyone :)
Yep, one thing @wcsdancer2010 has taught me, is that when i have a reaction to someone, it's because there is something about them that triggers us (ie:we're taking it personal and internalizing it) that had to do w past hurts, betrayal, insecurities, etc. I'm 34 and still have a long way to go, especially because of my personality type . I am very much alpha and straight to the point, w not a lot of concern for PC's. I'm still learning at this age, so don't feel bad,but you will get a lot more from this site if you hang around, than just dealing w herpes. It will help you to better handle life in general and people most importantly. I think objectivity is one of the hardest skill sets to master, than anything else. Keep your head up doll!
I'm new to H and this site. Am on another H forum but everyone who I tell I have constant pain, irritation, neuralgia, symptoms says H does not cause those things. I have ghsv1 and am only 9 mos. in w/No end in sight. Acyclovir did nothing. This pain on top of the mental anguish I face in regards to how this occured and I am ready to be done. I appreciate finding you guys and hope to gain anything from your experiences/insight.
@frankie1 are you located in the states? Are you seeing a GP or GYNO? They told me the same thing and I had severe neuropathy. Don't listen to them. Do you have any underlying health issues? Autoimmune disease's, other symptoms before H that didn't feel right, eczema/psoriasis?
2...yes I am. I have constant redness and irritation at the site of infection. I dealt with RA when I was younger and have a very hyper immune system. I'm in great shape (lift, run, eat well).
Only relief I get is through gabapentin...mentally and physically beat up
I'm male btw so no Gyno lol. constant pain irritation at site of infection.
Ok, well if you had RA, then I'm not surprised. I have autoimmune disease's and others as well and we have trouble controlling the virus. I too took the same meds you're on.
Have you googled an infectious disease doctor that specialize in herpes in your area? Are you taking daily antivirals?
Sassy please forgive me as I'm not trying hi jack your thread. Just in similar boat. Docs continue to state H doesn't cause constant symptoms. I disagree. Mine are very real and mos. of constant pain has me completely broken. Having trouble thinking this is a harmless skin disease. For me it's been a life sentence. No joy. In a black hole.
Tried acyclovir which I feel triggered this constant prodrome. I wake up @95%. Caffeine, hot water or any friction heightens the irritation badly. Next step Valtrex I guess. Unfortunately all autoimmune drugs will do is cause H to exacerbate.
Praying for any reprieve. I've lost my self badly
I wouldn't take any suppressive drugs having H if you have autoimmune issues. @frankie1 , how long have you had H now? Are you on steroids?
Since February. What's reasoning for no AVs with autoimmunity? Haven't dealt with RA in years "remission". So no corticosteroids.
Needing any relief. Have tried GABApentin, LDN, acyclovir with zero relief
B12 helps but gives me some crying spells, etc. Stuck here
Really you tried LDN? How long had you tried it and for how long? You haven't had H long, so I'm not sure how consistent you were w LDN and if you uooed the dosage properly.
No, I said no steroids should be taken if you can avoid it, while having H. As it seems to make it come back w avengence and people have trouble controlling H, even after they've quit the steroid's. Nothing wrong w taking antivirals w autoimmune disease's that I'm aware of.
I've just found those of us w autoimmune issues current or even symptoms from the past, just have major issues w controlling H.
2.5mg night for 3 weeks. 4 mg night for a few weeks. Nothing helped. Made me depressed even more. Even if a vaccine comes along I'm scared how my body would react to it.
The experts in my opinion know little about this disease. Thus it's spread.
Yeah, your dosage was way too high starting off. Who was monitoring you in this?
Ok... Well there in lies the issues. It also takes longer to wokr for some, than other's, but you're supposed to start off at .5mlgs and go up every week or two depending on how you feel. You can't even validate if this is the real deal, because you got it online, not something we recommend.
I didn't buy it online. My MD prescribed it. Got it at. Compounding pharmacy in Colorado. Real deal. Didn't work.
I did do 1.25 for a week or so than turreted up. Maybe 6-8 weeks total. You can only get small dosage LDN at a few certain reputable pharmacies. Trust me I'm a doc myself. I know it works for some but did nothing for me. Not trying be negative just honest. I felt my mood start to dip that's about it.
You're a doctor? What kind?
Dunno what DC is, other than the city! ;-)~
So sorry you are suffering so much. Perhaps you should contact Westover Heights clinic. They may have some ideas for you regarding dealing with H with an Autoimmune Disease.
And you may want to look into Low Dose Naltrexone...LDN has some potential for people like yourself who have ongoing pain due to post herpatic neuralgia.
https://www.drgonzalezmd.com/low-dose-naltrexone-for-fewer-herpes-outbreaks/
WS thank you. I've done both those options to no avail.
So you tried the Naltrexone? If so, we have people on here who are interested in if/how it works (or not)
See my responses above. Constant irritation didn't stop. Just made me cry on the drop of a dime and depressed. Got off it and that stopped. I am def. prone to autoimmunity due to eczema, allergies and another previous autoimmune disease
