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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.
ash128083

Losing Hope/Looking for a Solution

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ash128083

Hi all. I’m new to this site but belong to other ones. I’m a 34yr old female and was diagnosed with genital herpes (idk if its type 1 or 2) about 10years ago. For the first year my outbreaks were typical, I would get a sore in one place and it would take its course. This happened every several months and sometimes I would take the antivirals to help clear it up sometimes I wouldn’t. I don’t even remember my first outbreak being that terrible. After about a year I decided to go on suppressive therapy. I started with 200 mg of acyclovir twice a day and eventually went to 400mg twice a day (not because the 200mg dose was ineffective but because 400mg dose is standard). Anyway, I was outbreak free for eight years. The only time I would get a mild outbreak which felt like a yeast infection is when I was on birth control which happened every 3-4 months. I stopped birth control and was fine. Fast forward to about two years ago I started a very low dose of antidepressants and a week later I had the worst outbreak of my life. I am mediately stopped the antidepressants and thought it was a fluke and continued my medication and didn’t really think anything of it. For about a year I was getting horrible outbreaks every month sometimes twice a month but they weren’t typical like before. My whole vagina would become red, inflamed, irritated, I would not get any actual sores but they would be intense pain, itching and burning, sometimes to the point where I couldn’t walk. I started to increase the antivirals and after a year I went to my doctor and switch to 1 g of generic Valtrex, which helped for 6-7 months, and then again I noticed these symptoms, but milder, every month during ovulation. When this happens I will increase to 2 g of the medication and day. It will clear up in about five days and ease the symptoms but it seems like nothing is suppressing this anymore. I thought the longer you have the virus the better it gets for you. What a crock of shit! I eat well, I’m at a healthy weight, I exercise five days a week, I sleep well, I take vitamins, lysine, elderberry, cats claw, olive leaf, prunella vulgaris  and a probiotic. I do have asthma and have been on prednisone which is an immuno suppressant quite a bit but despite that I never got outbreaks up until two years ago. I am married with two children, my husband is negative, and this is really taking a toll on my life. I’m constantly irritable because I feel like I have constant symptoms even when I’m not having an outbreak. It’s been extremely hard to take care of my kids into normal day-to-day activities because of the state of discomfort I’m in. I’ve even tried a few months of name brand Valtrex and it only seems to help if I’m on a high dose. I am seeing my doctor next month and going to asked to be referred to an infectious disease specialist. I feel like I’m constantly contagious. I’m losing hope and just want some solutions on how to have a better quality of life. Has anyone experienced something similar after years of having the virus? If so how long did it take before it got better for you? I’ve been seeing more and more people not responding to the antivirals. I feel like something has to be going on with them, it just doesn’t make sense. Sorry for the long post I’m just looking for some support and help.

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veagle

I asked a doctor on similar question of people getting immune to the Valtrex or antiviral med when on it for too long. The doc said it shouldn't be, but a lot of cases, its actually not the fact you are getting immune to the med, it is people's natural immune system declines with age, so if you are on it for 10-15 years, you may feel its less effective at the 15 year mark, its actually because your immune system is not as strong as 15 years ago. Its a natural process of people aging, immune system declines. 

He also recommend to speak to your own doctor, see if can try other antiviral med, there's 3 different types out there in the market, they basically does the same thing. So if you change, and still feel the same, then its probably your immune system, if you change, and you feel better, then maybe its the med. 

I think i saw online somewhere, stating only 0.5% or so people develop immune to those antiviral med, very rare case, normally on immunocompromised people. but dont quote me on that... good luck!

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IcantThinkofaName

I notice more outbreaks with hormone fluctuations, I think thats why its worse for women then men (typically) . And it seems like more OBs in winter.

I am so sorry. I was also hopeful that it gets better with time. 

I took the A/Vs for 1 year. I stopped in Sept. And in December I had a really bad OB, and now I have another one, not as bad , just one spot, but very sore and irritating none the less. I am worrying that not taking the Avs it will go back to what it was before...I had around 9 Obs a year. The Avs didn't stop my obs completely . It just made them less often, less bad. more minor/less sores and shortened the duration.  Maybe I got 3 or 4 OBs that year. 

 I hate this disease. Anyone who says its no big deal either doesn't have it, or is lucky enough to have seldom or no OBs.  Im definitely  more down when I have an OB. All the soreness and sensations are completely depressing.Always a reminder of my mistake.  I don't think I'm ever gonna find a partner. Its good you have a husband  and a family to give you love and support.

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lennyblastoff

I would look into trying Trans-Resveratrol which is sold at the vitamin shop its the only thing thats helped me with my itching, and vitamin d3 helps with the burning of my ass 

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Mikeike3

what lose dose antidepressant?  I am on pamelor and trazodone for sleep

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HSC44

I am on this forum because I'm in a nearly identical situation. I was diagnosed with HSV2 when I was 24, I'm now 42. I was largely symptom-free for most of this time until I decided to stop taking birth control about a year ago. I immediately had a dramatic HSV2 infection like I've never had before AND a cold sore, something that I've never experienced in life. I decided to go back on the birth control because it was clear (or so I thought) that this was the reason for these constant outbreaks. I went back on  birth control, but literally nothing has changed, I was finally able to keep cold sores at bay by taking an herbal supplement I found after tons of search (herpease or herprescue?)  Although a little red spot that is almost invisible if you're not looking for it constantly comes and goes on the left side of my mouth, ready to break into a full eruption at any time.

The herbal supplement has not helped with the constant HSV2 attacks, however. I am currently experiencing a nearly month-long horrific outbreak that has me Googling things like "Can herpes send you to the emergency room?" and "Can you die from a herpes outbreak?"

My symptoms are exactly as you have described/same locations. Again, this severe reaction is totally new to me and I'm nearly 20 years into my diagnosis.  At the start of this outbreak, I broke down and called my OBGYN, the nurse there put me on acyclovir 5x/day for 5 or 6 days. I started taking it 3 days into the outbreak and therefore it literally did nothing for me (probably, too late). I called back and was prescribed another supply. Took this, no effect. In the meantime, I gently dry the area with a blow dryer and then pat corn starch on.  

I have yet to see if my daily suppressant will work if this current infection EVER goes away but I am completely horrified, miserable, and wearing a mask for the rest of my family. 

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AloneForever
Posted (edited)

@ash128083 Did you ever get any answers from the infectious disease specialist? I am debating if its worth me going to one soon. I am having the same exact problem. Got Hsv2 back in 2015 before my 31st bday. Took Valtrex 500mg for 2 years w great success. I stopped around end of 2017 after galbladder surgery and I was fine for about 5 months taking nothing, so I figured my body did its thing and like everyone says over time it gets better. Then, I started getting outbreaks every time I'd get my period. I dont see sores just pain aching itching burning. Off and on outbreaks around periods so Id take 1 gram daily for  a few days and it would go away. They kept getting more and more frequent til it was every month sometimes twice per month. Nothing has changed if anything, my stress levels have dropped, I am working out and eating much better. My periods were strange for awhile and now they are coming back monthly and so is my herpes. I started back in March of this year back on 500mg Valtrex daily so I can get my life back like I had for those first 2-3 years. (or so I thought) I am getting outbreaks and even really bad painful ones aching all the way up my tailbone down my butt cheeks around my vagina tingling all over and over my vagina burning. headaches, some urinary retention when I try to pee, cant walk. So I am arguing w doctors and all they can tell me to do is get my immune system checked since it stopped working.. I asked to be put on 1 gram daily of valtrex, i bought lysine have yet to try it, but so far still struggling. Im about to be 36 in a week and I feel like no one will ever love me. I feel the same way like I am a big walking disease all the time and that I can give this to someone if valtrex wont even control it anymore. I dont know what to do. I feel awful. Right now I sit here a week after my period and its coming back. I JUST had it bad before my period.. I dont get this at all. Why is it attacking me all of a sudden? It makes me HATE the person who did this to me. My tailbone and my behind is is killing me w the last two outbreaks... I just want this shit out of my body and have my life back.

Edited by AloneForever

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ash128083

Hi. I’m sorry you’re experiencing this too! I haven’t been to the infectious disease doctor because of the covid pandemic. I’m scared to go and take the risk of getting sick. That’s another thing. I have asthma and this is the longest I’ve gone with not getting sick and yet I still get these symptoms every damn month. I’ve noticed that I start to get prodrome the day my period ends and lasts into my fertile week so I take 2 of the 1g valtrex For 5 days and double my lysine. This has helped somewhat. Right now though its way after my fertile week and I feel an outbreak coming on. Some redness and swelling, inflammation but I don’t see sores. I’m at a loss. I’m so afraid my husband is going to divorce me over this. I can totally relate to you. I want my old life back. I want a cure of better treatment. When will we have a better quality of life?! I get so angry too because out of my group of friends I was the one in long term relationships, I didn’t sleep around and this happens to me. Hang in there! Supposedly that medication pritelivir is coming on the market soon. I’m praying it helps.

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Nath
1 hour ago, ash128083 said:

Hi. I’m sorry you’re experiencing this too! I haven’t been to the infectious disease doctor because of the covid pandemic. I’m scared to go and take the risk of getting sick. That’s another thing. I have asthma and this is the longest I’ve gone with not getting sick and yet I still get these symptoms every damn month. I’ve noticed that I start to get prodrome the day my period ends and lasts into my fertile week so I take 2 of the 1g valtrex For 5 days and double my lysine. This has helped somewhat. Right now though its way after my fertile week and I feel an outbreak coming on. Some redness and swelling, inflammation but I don’t see sores. I’m at a loss. I’m so afraid my husband is going to divorce me over this. I can totally relate to you. I want my old life back. I want a cure of better treatment. When will we have a better quality of life?! I get so angry too because out of my group of friends I was the one in long term relationships, I didn’t sleep around and this happens to me. Hang in there! Supposedly that medication pritelivir is coming on the market soon. I’m praying it helps.

I am in the same situation,I keep postponing all my doctors appointments because of the Covid19. Late August is my eye appointment to check for the virus in my eyes, but I already know that I am going to cancel it. 

I want my old life so bad, the virus is almost everywhere in my body. I have enough of not being able to hug and kiss my baby, i have have enough of sores in my nostrils and all over my scalp!

 

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horseygal

hi all

i feel your pain exactly the same, had this for 18 months and i have been on valtrex 6 months and its got worse not better, OB got to every 1-2 weeks and there was no pattern to it, i have now learnt that anti-virals can wipe your immune system of antibodies so in the long run can make it worse if used as a suppressive treatment - see here https://askingforafriend.us/articles/f/what-about-antivirals

i stopped valtrex 3 weeks ago and started taking a homeopathic remedy and had no OB for 5 weeks then the most horrendous OB lasting 3 weeks with multiple constant eruptions down below, so sore i couldn't sit down, ride my horse, pee without being in agony, i also have sores on my face, ears and scalp no idea if its HSV or anything else but it started during taking valtex for suppression so i wonder if its another symptom as a result of trying to suppress HSV 

i'm just now giving my immune system the biggest boost, sticking with homeopathy and hoping for a cure one day!

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