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My long ongoing saga with G-HSV1 atypical symptoms, please come and listen, advice and help needed


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My apologies for the book of text, this is my first time writing about this, i dont post much online, but I am at my witts end. i'm an early 30's male with no previous health issues.

 

So late October before Halloween i was blessed with this Horrible disease from my girlfriend. At first I had very horrible flu like symptoms, kind of like a nasty stomach flu. I was weak, constantly nauseous, cold sweats, chills. It was bad enough where i was out of work for over a week, and i never miss work. I also noticed I had a small open sore on the shaft of my penis near the head, i never had a cluster of blisters, or any crusty fluid or discharge. I did also have a few red bumps on the underside tip of my penis that never developed into anything else, and they are still there to this day.

 

Of course concerned I went to my Doctor, she saw me, i told her of my concerns about herpes. She said it didnt look like herpes to her since it was a single sore and not a cluster or oozing fluids. She said i must have caught the flu since it was really bad this past year, and sent me home to get rest.

 

Well the next week i was feeling very very slightly better still pretty weak, the sore was closing up finally, took about 2 weeks. However now i noticed very very small, almost needle point sized red dots developing on the head of my penis. Around the same time I also noticed some red and purple spots that look like they are underneath the skin. Also I have mild burning in my urethra the tip of my penis, and it seems to always be inflamed. It causes discomfort just rubbing on my underwear, when I pee I can never seem to get all out no matter what I do I'll dab with TP, and it still dribbles out like I have no control over it.

 

Still concerned I go back to my Doctor, I insist I want to be tested for infections and STD's. I get a full barrage of testing, white blood cell work up, HIV, Hepatitis, Herpes IGG and IGM, Syphilis, Chlamydia, Gonorrhea, Tric, UTI, everything i could think of.

All of the tests come back negative or normal. I am relieved for the moment, but wondering what is going on with my body.

 

Fast forward to November...the red dots turned brown and seemed to have healed, but left very mild pink/red areas on the head of my penis, and around the top ridge that are very sensitive and sore. Kind of like raw skin. The red and purple spots seem to keep appearing in different areas on the head of my penis. They almost look like burst blood vessels under the skin, however i havent had sex or masturbated since October so it cant be from physical use.

 

I know these symptoms might sound mild, and they are very mild to the eye. We are talking about red, pink, and purple marks that are on an area of the body that can range in those colors normally for different people.

However I am extremely uncomfortable, the red/pink patches are constantly sore and sensitive to the touch. Even walking for long periods of time is extremely irritating, nevermind even thinking about sex or masturbation.

 

Once again i go back to my Doc, he isnt sure whats wrong and prescribes me some corticosteriod cream. The cream doesnt help. I left him know and he refers me to a dermatologist.

 

At this point is is now about 3 months since my exposure, I have been to 2 dermatologists and 1 urologist, the Derms gave me different types of antibacterial, antifungal, and corticosteriod creams, and nothing seams to help. I made them do a swab and scrape sample and they came back negative for bacteria or fungus. 1 Derm said he didnt see anything wrong, and the other said it was just dermatitis and would go away on its own... The urologist checked my urine and prostate, both normal. He gave me some prostate flow pills just to see if it would help, and told me to see a Derm as he doesnt have any ideas... The irritated skin still just wont go away.

 

At this point I go back to my Normal doc and ask to be tested for all STD's again, the same list from the first time. At this point I am about at the 4 month mark. They all come back negative again.

 

Around the 6 month mark, in my desperation I go to a 3rd Dermatologist, she was very nice and seemed concerned. She gave me an antibacterial cream, and an antifungal to see if it would help. she also swabbed me on the 2nd visit after no improvement, and nothing was found. She referred me to another urologist. I went to see him, told him my whole saga, and he was a joke. He looked at my penis, said the mild irritation could be a mild vascular problem and to take 1 baby aspirin a day. Are you kidding me!?!?!

 

I know there is something wrong with me so as of 2 weeks ago (about 7 months in), I decide to go to planned parenthood to get another full STD screening done. I did some research online and they use the better more accurate IGG tests for Herpes. I had the full barrage of testing done and low and behold I come back positive for HSV1! They didnt even want to give me any meds because its type one. I have been on Valtrex for 2 weeks with no improvement so far. :(

 

I let me girlfriend know and she was upset with herself and told me she got coldsores as a kid, and gets them once or twice a year, but didnt know she could spread it genitally, great....thanks :(.

She decided to get tested at planned parenthood as well. She came back positive for both HSV1 and 2!! She swears she didnt know and never had symptoms.

 

At this point I am looking for any advice or help. I am very aware my symptoms are atypical and strange, and yes I am aware that herpes usually comes and goes, but not comes and stays. However what is going on with me then? its like im in a constant prodrome that wont go away. I am scared I will never have a normal penis again, its severely impacting the quality of my life. At this point i WISH i had normal herpes, at least it comes and goes with periods of normalcy. I'm in a constant state of discomfort.

 

Currently im taking 1000mg of valtrex, plus lysine and every other vitamin or supplement you can think of.

 

 

Thanks in advance for any help or advice.

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@williteverstop

 

First - hello and welcome!

 

I wish I could give you an answer to when it will stop. Certainly you seem to be in the uber-minority (along with @GetsBetter111 and @Whitedaisies) who seem to have ongoing prodromes from GHSV1 ... (and while that may seem like a lot on here, remember we mostly get people like yourself who are struggling to get answers so we are weighted towards people who are outside of the "norm").

 

I've asked @Adrial if we can see if Dr Peter Leone might have some insight to pass on. So far all 3 of you seem to have HSV1 genitally so I wonder if that is worth looking at further. Otherwise all I can say at this point is that *over time* (and I can't say how long) you *should* get better. I have never heard of someone having prodromes/ongoing symptoms for much more than a year ... or at least they are significantly better by that time and usually still improving. I hope Dr Leone may chip in at this point because I'm interested in finding out if there is anything out there to explain this.

 

I DO want to say that it's entirely possible that your GF had no idea that she could pass it on - until a few years ago *I* was under the impression that HSV1 stayed up north and HSV2 stayed down south. And I was told that I didn't have to worry about passing it on without an outbreak. It wasn't until a then-developing relationship BF freaked out and did some extra digging that I found that medical understanding had changed a LOT since I had last done any research ... and even with that there are MANY doctors out there today who are well behind on their Herpes knowledge.

 

Do you know your GF's numbers for the HSV2 results? I ask because without symptoms, there's a 40% chance of a false positive if the numbers are between 1.1 and 3.5 so if her numbers are in that range I'd suggest she do the Western Blot test which is the Gold Standard of herpes testing (tests for 14 proteins as opposed to 1 or 2). The practitioners there are at the top of the list for herpes research and knowledge and they do phone consultations, so you may want to call them anyway and see if they have any ideas about what is going on for you.

 

http://depts.washington.edu/herpes/faq.php#faqCat-3

 

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.

 

Sorry I can't be of more help you as far as how long this will continue ... all I can suggest is that you reduce your stress levels as much as you can, get on a really clean diet, take supplements like L Lysine and B vitamins (help with nerve regeneration, etc) and maybe even Turmeric to reduce inflammation .... do everything you can to help your body to fight the virus ... and let us know if you talk to WH and let us know what they say... and hopefully @Adrial will see if he can find an answer as well...

 

(((HUGS)))

 

 

 

 

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Feel free to PM me if you need any advice or you can read my posted discussions. It will get better over time. Keep up with the antivirals...it took about a month of taking it to reduce my symptoms that still aren't totally gone after a year and a half. Everyone's body is different. Sometimes it just takes time for your nerves to heal.

 

@Wcsdancer , I would be greatly interested in any comments from dr Peter leone.

 

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Thank you both for the support and hugs :)

 

@WCSDancer2010 I dont know her number but ill see if i can find out. Thanks for trying to find out more info, and for the advice.

 

@whitedaisies thank you, i might take you up on that. I'm praying (and im not an overly religious person) that my body will eventually calm down, so i can have a half way normal life again.

 

Did you have any luck with any vitamins or supplements? Which antivirals worked best for you?

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IMO nothing has helped but time honestly. But everyone is different and things could work for you that didn for me (I really hope).

 

My suggestions woul be:

1) take lysene can't hurt and it could help if your diet is off balance

2) eat healthy

3) take a probiotic

4) take vitamin b and c and d vitamins which should give your immune system a boost

5) take an antiviral at the outbreak dosage (not suppressive dosage) for a while (with drs approval). Valtrex helped me only on double daily dosage and still didnt take all feelings away

6) get lots of sleep

7) put coconut oil on ur irritated areas to soothe. That has helped me

8) take Epsom salt baths which is a great cleanse

 

For me personally famvir works best to reduce symptoms and shorten nerve sensations. I don't get classic outbreaks either. Apparently antivirals are less effective against hsv1 than 2. I have yet to go on acyclivir or valtrex again. I am sticking to famvir for now.

 

I really think time is just something we can't fast forward and does the most help.

 

You could also call westover heights and have them mail u pcr swabs so u can swab urself when these symptoms come up to see if they are herpes or not. That's the stage I am at now. Apparently you can't be on antivirals while swabbing either. Whenever I feel a weird symptom I swab and document and then when it's processed negative in my case, I know that it's not herpes or that i am sheddig so low that its not detected whch is good to lnow anyeay. That's how I am choosing to move forward) In the hope of relieving some anxiety)

 

I had to develop a plan of movig forward. It's way easier for people to emotionally heal and make peace with the stigma when they hve periods of dormancy or no symptoms. It's really taxing when something's going on all the time. I go see a therapist for emotional support. I went to h opp weekend which I really enjoyed (funny to say) and I continue to post on the forum when I just get so frustrated I don't know what to do. @wcsdancer always gives great advice.

 

Develop your plan of what you think you need to so to be able to get your life back. What are the issues that bother you and how you can decrease anxiety surrounding those issues.

 

Mine started to be to prove I had ghsv1 and now I have abandoned that journey (hsv1 pos they blood test w no seroconversion proof). So once I realized the strategy for me should be how do I feel safe having a healthy sex life then I started swabbing symptoms that worried me and so far I haven't got a positive swab. So I have been able to enjoy sex now after (1.5 years) and have an understanding fwb partner. Never thought I would be able to want and have sex again honestly.

 

Things will settle but you need emotional support so you don't go crazy. It's hard feeling like the "odd one out" or the "herpes freak". Get lots of hugs, support from a trusted few, use this forum. Unfortunately IMO dr can't help you at this point.

 

Good luck.

 

 

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I have type one also. When I was reading your post I almost had to look and make sure I was not writing it. This has been very hard from the start I had one very small ob that at first was told it was nothing like you then another doc told me it was possible so I got blood test done. I have the same spots you talked about.there for awhile I had a good size area that would almost look to flare up when I would pee.i have the raw feeling skin on head and around rim also.the urethra burn and inflammation and not having full control over peeing is the biggest bs and scares the shit out of me I'm also early 30s.if you or anyone else that reads this finds anything that helps please PM me thanks.

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Don't worry @getbetter111 , you are apart of the tiny H Misfits group and it's not fun, but I say it in a good way, we are unique to this virus. I must say, it made me play close attention to what I was missing in my diet, nutrient wise. In all the research I did, finding what promotes the best health for those of us, that herpes inflames our nerves a lot., that I was lacking a lot of stuff that was the culprit to lack of energy and a player in my depression. Now because of herpes and researching so I can feel normal again, I resolved unintentionally other issues I was having. I am not one who looks for the positive in the bad most of the time, I prefer to deal w facts mostly and calculate the outcome from those, but I'm not going to lie, it has w out a doubt been a scary blessing in disguise that fixed other issues I was having. Start listening to your body better. It took me 8-9 months and I got better... It will be a yr in July.. I went from remembering I had it every min, to every 30, to an hr, to a few hrs, to half a day, to remembering once a day I have it, because I hardly have symptom's anymore at 10 months plus some.

 

I went from feeling like I am living herpes positive, to dealing w herpes once in awhile. It makes all the difference w your state of mind and you will get there, be patient. I found the less I forced it out of my mind and thought about it, it helped. I stopped letting it consume my life, now i adress it strictly from a medical stand point and w no emotion behind it. You will get there. I was hating my body so much and felt betrayed cause why wasn't I like everyone else.. I swear, I am no hippie positive talk and feel type, but when I lived in that energy, it was worse. When I no longer lived in that, along w my supplemental routine I'd like to think, .. Things changed. I found myself snickering at reminiscing my dramatic reaction to herpes for months, as I gave advice to another. This will be you some day.. Have faith in yourself, the mind is a powerful thing.

 

I like to view feeding thoughts to your mind, the same way you feed garbage to your body; your mind will become what you consume (<<---metaphor!!) Tell yourself and convince yourself you can beat it and you will. I am far from some a hippie person (nothing against them), I say this because I served in the army and I know more than anything, that your mind Will make or break your body and some people, tend to not respond to the self happy talk..

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I went from feeling like I am living herpes positive, to dealing w herpes once in awhile. It makes all the difference w your state of mind and you will get there, be patient. I found the less I forced it out of my mind and thought about it, it helped. I stopped letting it consume my life, now i address it strictly from a medical stand point and w no emotion behind it. You will get there. I was hating my body so much and felt betrayed cause why wasn't I like everyone else.. I swear, I am no hippie positive talk and feel type, but when I lived in that energy, it was worse. When I no longer lived in that, along w my supplemental routine I'd like to think, .. Things changed. I found myself snickering at reminiscing my dramatic reaction to herpes for months, as I gave advice to another. This will be you some day.. Have faith in yourself, the mind is a powerful thing.

 

I like to view feeding thoughts to your mind, the same way you feed garbage to your body; your mind will become what you consume (<<---metaphor!!) Tell yourself and convince yourself you can beat it and you will. I am far from some a hippie person (nothing against them), I say this because I served in the army and I know more than anything, that your mind Will make or break your body and some people, tend to not respond to the self happy talk..

 

I LOVE this!!! Because like it or not, you finally experienced what we try to tell people on here All.The.Time.

 

1) Things WILL get better with time

2) Get educated about the supplements/topicals/vitamins/etc that work for others and find what works for you

3) Pay attention to your body and eventually you will learn what YOUR triggers are, and most will come down to some sort of stress; Dietary stress, physical stress, emotional stress, etc.....which leads to:

4) The more you obsess, the worse it will be ...

5) the same way you feed garbage to your body; your mind will become what you consume <<< Love that!!!!

 

I had to giggle at the thought that it won't be long before you are wearing tie dye and wearing a flower in your hair.... *snort*

 

 

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It was a relief in someway to read the experience of @getbetter111 and @williteverstop, that i'm not the only person going through this. My story is a little different.

 

I was diagnosed with ghsv-1 about a year ago. Although the initial outbreak was not great, it went away relatively quickly. Over the past year I’ve had a number of times where I’ve felt a burning/tingling sensation ..and probably twice where I had mild spots appear. However, over the past month I have increasingly started to have symptoms as described by @getbetter111 and @williteverstop.

 

Basically, I either have at one time or another.. burning in the urethra, general tingling, twitches, itching, burning in the scrotum area and soreness in the tip of penis. No spots or sores. The drops of peeing also started, which really have me worried. I find myself wanting to go to the toilet a lot more frequently also. I also at times have this strange feelings of drops of water running down my pubic area ..but there is nothing there when I check. Its really strange. I have one or more of these symptoms at all times now. Just wont go away.

 

The only things I've really noticed that has changed is that I had rash a few weeks ago in that area. All I can think of is that this triggered the virus for a extended period of time. Possible this ended up causing some kind of nerve damage or something. Just my speculation though. I guess that’s my biggest concern right now - if this is nerve damage or is the virus like constantly shedding. Or if its stuck in some kind of feedback loop between the two. Know its pointless to to speculate on these things. Seems I need to start putting more effort into winning the 'mind battle' also.

 

I'm taking 1000mg of valtrex although it doesn’t seem to be doing much.

 

Really happy that I found this site and really appreciate the advice from @WCSDance2010 and @2Legit2Quit and others. I will hope that things get better as its seems time is the biggest factor in this. Although this is a bit strange its develops like this a year into me having ghsv-1. Will try to start taking supplements and just change my lifestyle. I thought of myself as healthy but will start to examine my lifestyle closer.

 

Thanks everyone. Will keep you posted if I come across anything that helps.

 

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@WCSDancer2010 hahaha! I laughed at your last statement!!!! I love that your the encouraging mother on here, rooting for all your internet kids! What you guys do is so great.

 

@rome30 I was concerned about nerve damage as well during my primary ob and for a couple months after. I was in severe pain for sure. Having all the correct supplements I described, was based on research I did on promoting the best health for nerves to repair and ward off damage. I do believe for some people, their immune system goes in over drive and attacks infected sensory neurons, causing damage to the nerve sheathing, not necessarily damage to the nerve itself. Kind of like a fiber optic cable, if you break the covering, it now will send off broken signals and our brain responds w strange symptoms. I think for me, I'm not bothered by the crawling sensation, like a big is crawling on me or these tickling flutters I get on the back of my legs. I will say, where I get the crawly sensations, is where I've broken out. That sensation to me, makes me believe I'm shedding there. Just my thoughts and theories on it.

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Thank you all so much for the support and comments. @Getbetter111 i read some of your posts and we are not crazy, because i have most of your symptoms including my skin changing....awesome right..... /sarcasm So yes i believe its all related to H even though alot of people dont think it can do things like that.

 

I know everyone is saying to wait it out, and it gets better, but its very hard to remain patient after having constant irritation for 7 months now.

 

I think i might plead with my Doctors to try and start famvir to see if that has a better effect.

 

@rome30 your story is a bit scary to me as it didnt start for you for so long, i really hope i dont have to live like this for the rest of my life. This really sucks.

 

Sorry, just had to vent a little. I do appreciate all the kind words and stories. Hopefully they will come up with a cure before im 80 and dont give a shit about sexual relationships....lol

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Just an update, its been about 3 weeks of being on Valtrex and so far it has pretty much stopped the dull aching pain i would get in the head of my penis, which is a start.

I have had so many symptoms i dont remember if i explained this one. I would get a dull aching pain multiple times a day, usually for an hour or two at a time. Oddly enough i also have an old foot injury where i damaged a nerve and sometimes that acts up at the same time.

 

My sensitivity from just moving around has gone down slightly , however the redness and irritation haven't changed at all. I'm praying that by continuing the medication it will eventually help the other symptoms calm down, and maybe go away.

 

im going to call planned parenthood and see if i can beg them to renew my prescription or try starting me on famvir. They seem reluctant to give me any meds because they dont feel Hsv1 should need any.

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  • 4 weeks later...

Just an update, the Famvir was a huge fail for me at least. After stopping the valtrex and going on the famvir all the sensitivity came back worse then before, and some of the aching pain came back. I also got a constant burning type pain. Im calling my doctors today to switch me back, and see if they will up the dosage to 1,000 a day.

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  • 4 months later...
If the nerve pain won't stop, I advise getting on a nerve pain med. It helped me immensely for the four months I needed it.

 

HA! I might try, but wish me luck. i'm barely able to get antivirals, and those i had to beg for. every doctor ive been to basically doesnt believe me, says its all in my head, and that hsv1 cant do this.

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Since my last post Ive had testing done for a few bacterial infections as well as trich. Everything came back negative. I also tried a course of cipro and flagyl. Nether had any effect. The only thing i have ever tested positive for is HSV1 and that was after 4 months and on the 3rd test, so i believe its a new infection. I.E im not testing positive because i got cold sores as a kid(which i didnt) ive never had any cold sores on my lip ever.

 

I went to an infectious disease specialist Dr, and stumped him too. He basically told me to double up on the valtrex from 1g to 2g a day to see if it helped, it hasnt. He said that HSV1 cant do this, and cant do that.

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I am sorry you are struggling with this. I am in the exact same boat at two years in. It's very frustrating. I can totally empathize with you.

 

Viruses can trigger autoimmune stuff and also vasculitis which could be the red dots on your penis. I get those between my thighs sometimes if I have prodome.

 

How long did you try the double dose of valtrex. Give it at least a month or two.

 

 

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