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    • Voyager2
      Sure hope this pans out. 
    • Voyager2
      Don't forget there are two promising vaccines on the prophylactic front (but only pre-clinical): The Trivalent vaccine worked well on guinea pigs:  https://pubmed.ncbi.nlm.nih.gov/32347775/ The Einstein (Xvax) vaccine also has a ways to go: https://x-vax.com/ The fact HSV529 is in yet another clinical trial is good news for herpsters. 
    • Davrk8
      thank you for the info. I am uncircumcised. I applied some clotrimazole cream during the last outbreak I noticed, which seem to do the trick (around a month ago). But now, there new dots are appearing at a different location on the glans. Wasnt sure if balanitis can come back so soon or if it could be something else. 
    • Josse
      Looks like mild balanitis. If you are uncircumcised then thats normal every now and then due to accumulation of yeast and the irritation of the foreskin
    • MikeHerp
      I think the simple reason is that this is a fund raiser that was started by our community rather than by Fred Hutch.  Or rather, FHC started it in response to our request.   I still think they should somehow feature it in their pages.  But anyway, that's just how they do it. Keep in mind that FHC's main focus is curing cancer.  It's a cancer research institute.  They might feel that putting stuff on their website that isn't directly related to cancer might give people the impression, especially cancer cure donors (who are by far the main donors to FHC), that FHC is losing its focus. So we have to work within these limits.   However, I do draw strength from the fact that FHC has tried to help us with the fund raiser.  Among others: 1.  When the new research paper is released, FHC has gotten an agreement with a prominent sexual health blogger, to promote the research and the fund raiser. 2.  There is another potential promotion in the works that might get back on track if the US is able to get the coronavirus under control. So FHC has actively helped us to promote the fund raiser.
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AloneForever

Still getting outbreaks and flashbacks nearing 5 year anniversary

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AloneForever
Posted (edited)

Hi everyone. I thought by now, 5 years almost later, I'd be asymptomatic or my body would tolerate herpes (hsv2) by now. My primary outbreak was bad; Urinary retention, looked like canker sores you get in your mouth all down there, (which was horrifying), abdomen and genitals completely swollen, couldn't walk, severe pain, etc. back in May 2015, For 2 years I was on Valtrex. The first year was actually fine other than one blister or two popped up with no others symptoms a few months after the initial around September or so. Then on October 2017, I had 2 severe gallbladder attacks and had to get emergency surgery to remove my gallbladder. (not sure if my gall turned like muck due to the daily use of Valtrex 500mg) After surgery, I was really sick so I gave my body a break from the Valtrex and not having symptoms and even knowing I had herpes during that time, I figured maybe my body fought it off or it somehow went dormant and that was that. Well I had no outbreaks from October until maybe March 2018-ish. Then they started coming back every time before my period. I don't get sores, sometimes one tiny little blister, just mainly itching or very sore tense burning muscles around the vagina, sorta like brushburn or razor burn and aching. So I take the valtrex and it stops. I dont always get prodrome symptoms, but when I do I get this pressure that shoots from my tailbone down my left buttock. Anyway, I haven't been great about taking the Val every day as I used to. I have not been on a date since Sept 2015 when I was with a great guy after the jerk that gave this to me. He was accepting and great but I wasn't ready and ruined things w a great person. Herpes was a lot to take in and I wanted more time to learn about it before jumping in with someone new. So I haven't dated since. I'm honestly feeling like a big walking diseased monster still til this day. I am not sure if I just am not taking the Valtrex daily enough, (I'm still missing doses) but the outbreaks still come every month now. I am starting to push myself starting now to take it daily so hopefully I get the results of the first 2 years, but does anyone else have outbreaks after this long? Or after suppressing them for the first initial years they come on strong 2 years later?? I feel its worse now than my first 2 years of having this crap! To make matters worse I am turning 36 this year, my biological clock is ticking, and I haven't dated since. Terrified as men have been judgmental to me about this to even try. Its hard to meet anyone in my area there are slim pickings and ive tried dating sites. I constantly have flashbacks to my initial outbreak and that entire terrible year. (the initial outbreak, the embarrassment, wearing a catheter it all haunts me til this day) I even have gone to therapy and everything.  Does any of this happen to anyone else? Does anyone have worse outbreaks years out than they did after first contracting this? Does this disease ever calm down on its own or go dormant for years or am I stuck getting outbreaks often? I thought by not taking the Valtrex as much or only around outbreaks it would give my body a chance to fight the disease. Does this ever get better??! I still am as distraught as when I first contracted. I am still having a tough time with this. :(

Edited by AloneForever

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lennyblastoff

try taking supplements like olive leaf or resveratrol if your experiencing nerve pain look into ala

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Yannthe

I swear by zinc supplements for my immune system. Not sure if it's proven to work well with herpes, but it's a given it improves hair and skin. 

Zinc picolinate I am using. 

Echinacea and Elderberry Syrup also boost immune system.

Basically anything that relieves stress and boost immune system should make outbreaks less often and less severe. 

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Yannthe

To be honest, what I feel like after reading this. Just focus on the other areas of your life you mention and not the herpes. 

Once you start dating and you really like each other, I can tell you (from a guys perspective), that probably most don't really care as long as they are informed about HSV. The main problem is that the average guy on the street is clueless and thus might have prejudices. If he doesn't want to get into a relationship because of HSV, he probably uses it as an excuse (and there are underlying reasons why he wouldnt want to be in a relationship)

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AloneForever

@Yannthe Thanks so much for your kind words! I'm attempting to do that now changing my diet up and taking my medication daily and trying to lose the bit of weight I put on since my diagnosis. Just want to feel myself again and like you said, maybe the thought of the herpes will go further back in my mind. I am wondering if being in contact often with the giver as a friend over the years been one of the reasons I cannot heal fully either. He still has toxic tendencies and still denies ever knowing he had it. I never looked at it that way with guys though. (the underlying reasons and using herpes as an excuse) My best friend who's like my big brother also reminded me the guy I hope to reconnect with and spend my life with someday, never was bothered by my diagnosis when he met me, even researching it himself bc he really liked me. (i messed things up bc I just got the herpes right before meeting love of my life and just wasn't ready.) Anyway, I will look into the Zinc! I never heard of Zinc as an aid to herpes outbreaks. I am debating going to maybe heavier therapy also with someone who specializes in this stuff.

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Yannthe
Posted (edited)

Do know that most guys have mild symptoms, and more than 50% don't know they have it. So don't automatically think that he is hiding things. 

Herpes is seriously not a big deal and you can prevent outbreaks or make them less severe by living really healthy.

Where I see two benefits:

1. You get motivated to live more healthy, so you automatically get less outbreaks.

2. You will never be scared of getting herpes because you already got it.

AND 25% of people already have hsv-2 by the time they are 50 

Edited by Yannthe

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Gili
On 4/5/2020 at 8:01 AM, AloneForever said:

@Yannthe Thanks so much for your kind words! I'm attempting to do that now changing my diet up and taking my medication daily and trying to lose the bit of weight I put on since my diagnosis. Just want to feel myself again and like you said, maybe the thought of the herpes will go further back in my mind. I am wondering if being in contact often with the giver as a friend over the years been one of the reasons I cannot heal fully either. He still has toxic tendencies and still denies ever knowing he had it. I never looked at it that way with guys though. (the underlying reasons and using herpes as an excuse) My best friend who's like my big brother also reminded me the guy I hope to reconnect with and spend my life with someday, never was bothered by my diagnosis when he met me, even researching it himself bc he really liked me. (i messed things up bc I just got the herpes right before meeting love of my life and just wasn't ready.) Anyway, I will look into the Zinc! I never heard of Zinc as an aid to herpes outbreaks. I am debating going to maybe heavier therapy also with someone who specializes in this stuff.

hi there hope you are ok. I was in the same situation. After 5 years i was still getting constant outbreaks and valtrex stopped working. I’ve changed my diet and it seems to help a lot. Try high foods with lysine and avoid all with high arginine. Also i take vitamins (vit c 1000mg 3 times per day, echinacea, propolis, vit d3 and zinc)You can also add selenium.  those seems to work. Try also taking fresh raw garlic for a few weeks in huge amounts or garlic pills. But fresh is better to start with then you can switch on the pills. Diet is important. I hope this helps. im feeling better since i started this I have been dealing for nearly 6 years, im turning 35 soon and some days i just want to kill myself because of the pain and the depression. 

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AloneForever

@Gili Thanks for the suggestion. The valtrex still not working. I been taking it for 3 -4 mos consistently and this sucks im sitting here w awful muscle pain in my tailbone around my crotch and literally up my butt. I feel tired achy and had a headache before this started and my whole lower back is aching. I am sad it is coming on stronger after 5 years. I am about to be 36 and would like to find a partner to grow old with and not have to deal with out breaks anymore and go back to how I was symptom free for the first 2 years. Idk what is going on. I feel the same way about the pain and depression. I dont know if I need to up the dosage of valtrex to 1 gram a day or what. I hate the a**hole that gave this to me :( Do you still take any suppression meds? I heard valtrex is the better one too. I didnt think I'd ever be in this boat. I cant date as long as I am getting outbreaks with every monthly. *sigh*

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QMJ
On 6/28/2020 at 10:08 PM, AloneForever said:

@Gili Thanks for the suggestion. The valtrex still not working. I been taking it for 3 -4 mos consistently and this sucks im sitting here w awful muscle pain in my tailbone around my crotch and literally up my butt. I feel tired achy and had a headache before this started and my whole lower back is aching. I am sad it is coming on stronger after 5 years. I am about to be 36 and would like to find a partner to grow old with and not have to deal with out breaks anymore and go back to how I was symptom free for the first 2 years. Idk what is going on. I feel the same way about the pain and depression. I dont know if I need to up the dosage of valtrex to 1 gram a day or what. I hate the a**hole that gave this to me :( Do you still take any suppression meds? I heard valtrex is the better one too. I didnt think I'd ever be in this boat. I cant date as long as I am getting outbreaks with every monthly. *sigh*

I feel you. I’m 20 and have had hsv2 for 10 months. My intitial outbreak was the worst to the point where I couldn’t walk. My lesions were terrible. To make things worse I asked the guy who gave it to me if he was clean or not and he said yes. I get tested very often so for him to lie was just a huge heartbreak because now I have to live like this forever. It’s been 10 months and I’m currently on suppressive therapy taking 1 gram of valacyclovir. Right now it is 3:37 am and I cannot sleep because I just felt so itchy down there. The valacyclovir works for me but I noticed that when I’m stressed my hsv 2 overcomes the valacyclovir and I get this disgustingly itchy drip of discharge. I can literally feel the clumpy discharge come down my vaginal canal and the itchiness won’t stop until I get it out. I had to layer acyclovir cream onto my area and rub down there until the itchiness went away. I constantly think about how if this is what 10 months looks like, how things will be when I’m older. I read about people not having any symptoms and I just wish I could be one of those people. I’m already taking a whole gram and still have to fight with herpes. I think about what it’s like going to have to date and I just get really sad. Im so nervous to tell the next guy I’m with that I have this. I constantly regret being with the man that lied to me about getting tested and being clean. That man blocked me on everything ever since I told him and I never even got an apology. When does it end? Sometimes I find myself reading blogs for a cure but I know that’s not how this works. I just want to be asymptomatic and Find someone who will love me through this. 

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