williteverstop

@williteverstop have you gone to see a rheumatologist yet? I am going to request mine put me on a drug called LDN, low dose of course. There are doctires that prescribe it even to help w H symptoms that won't go away, as it boosts and modulates the immune system.. That's why a lot of people w autoimmune take it, such as for MS, lupus, RA and Sjogrens. The people in my autoimmune support group swear by it. Havent tried one yet, all doctors so far have been a waste of time and money. I'm easily $2+ grand in the hole from Dr's copays, tests, and meds.

@williteverstop Will do U have hsv1? Sadly yes I do

Going on a year now, still having the constant symptoms listed in the thread i made. Add me to the list too please. This is hell, this disease ruined my life.

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.

Yes the skin has changed and looks more wrinkled and has less elasticity. I have the same redness and tenderness. Ive been on 1000mg of valtrex daily for about 3 weeks, and while it did make some of the nerve pain i had go away, this issue is still the same :(

Thank you, that would be great. ill send you a pm.

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.

I have had the same thing going on for 7 months, and I believe its 100% h related because it happened right after i had my first OB. I havent found anything yet to help. I've been to 3 derms and 2 uroligists, tried every steroid creme, antibacterial, and anti fungal with 0 improvement. I know this is old, but i want my answer to show up if people search.

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

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?

I hear you my friend, im in the same boat. 7 months and no end in sight, ive been on valtrex for 2 weeks im PRAYING it helps. Do you have type 1 or 2?

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.