Toooldforthis

Hi all, In my HSV adventure I have had a lot of difficulty. My outbreaks (HSV 1 and 2) have been increasing in frequency and severity over the course of several years, which is what led to a diagnosis. Now I am not responding normally to the antivirals so the doctor decided to see what was going on with my immune system. Turns out I have an immunodeficiency (exact nature is still being determined) but without the herpes diagnosis I would not have received this diagnosis. Knowing you are immunodeficient is pretty important so I am definitely feeling GRATEFUL TO HERPES. Never thought I would say that.

Hi SusieQ, As if being post menopausal isn't bad enough, right? I am also your age and was initially very sick from the drugs. Stopped taking them and resumed monthly (sometimes weekly) outbreaks. Switched to acyclovir after seeing a much better doctor and began the dosage slowly. Still got sick but less so. After a couple of weeks of ramping up the dosage all the side effects went away and am now in suppressive therapy and can increase it with an OB if needed with no problem. Now the only problem us the outbreaks are still happening

Ok, now on two acyclovir per day for suppressive therapy and have an outbreak. I assume I should take three per day for five days (what I read) and I've also left a message on my doctor's voicemail. I know you're not a doctor (probably could be) but does that sound right to you? Thanks!

Thanks so very much. I wonder if my OB's will ease up (they have all but stopped on suppressive drugs) since they have presented so strangely. Nothing for years then all of a sudden several outbreaks in a few short weeks. I feel addicted to the drugs--I know it will cut down my risk of transmission to my husband--but a part of me would like to see if this thing will go back to sleep. I have a very good friend who contracted H many years ago and she was the first person I told after my husband. She reported that she hadn't had an outbreak in 10 years. I am also on HRT so perhaps I'm not letting menopause do its job. Some days I am fine with this then it hits me and I get upset. I hope that as time goes on I will come to a place of acceptance. And of course I've got my eye on the clinical trials that are taking place so hope also that they approve more and better drugs. "It's just a virus with a rash" is my mantra these days. Be well!

Wow my post only half saved. Here's the rest: I am wondering how I have managed to have this for over 30 years and not passed it on to my husband, or how has he passed it on so long ago and not had symptoms himself? He does not want to be tested, says he doesn't care but he might change his tune if he has an OB. I feel like if I knew he had it I would worry less but I don't want to press him. It's a fragile time, for me anyway. Feel like I'm going just a little crazy but I am tolerating suppressive therapy now so that helps. Sorry for the ramble and rant and thank you!

Ah thank you! Do you take suppressive drugs? Has it gotten better for you over time? Will I ever feel sexy again? (Ok, you might not be able to answer that one.

I am 54, positive for HSV 1 and 2 and have only been diagnosed recently, after 30 years of marriage. So after all this time of lying dormant or at least unnoticed I've gone through a period of multiple outbreaks in the last few months. Am currently on acyclovir suppressive therapy. I'm looking for others my age on this site who might relate to this late-in-life situation. Anyone out there?

I sent you a message WCSDancer. At least I think I did!

Yeah, we both agreed at the beginning that either of us could have brought it into the marriage all those years ago. It was just that yesterday after the test results came in, he felt he needed to ask "just once". I don't blame him for asking though and I doubt we will have the conversation again. I think I could use to see a therapist at this point. At least that's how it feels today.

I'm a 54 year-old female just recently diagnosed with both HSV 1 and 2. Married 30 years and as far as I know, we've both been faithful. Don't know why this is showing up now but I'm dealing with it ok. I would like to both offer support and receive some. So, just someone who thinks they can relate to me.

Just another wonderful side effect of menopause. Yippee! Husband has no symptoms but last night did ask me once more if I have slept with anyone else. That was a not fun moment. He says that occasionally he gets a rash on his chest which clears up quickly. Do men exhibit symptoms this way?

Have recently been diagnosed--blood test confirmed antibodies for both. Never had a severe initial outbreak and had my first OB after 30 years of faithful marriage. OB's are on my buttocks and are not severe though they started to appear more often--first every month, then every week--which is what sent me to the doctor's in the first place. Until then was blissfully unaware. I am currently on 400mg acyclovir split into two doses a day for suppression. Crossing our fingers here! I would love to hear from anyone who is positive for both or who just wants to chat. Have found much support and information on this site--very grateful.

Yes, we discussed what to do in case of a breakout--I'll increase the dosage. And as for the rest, great advice which I will take for sure. Here's a strange question though, I'm still itchy if I sit for too long, even though I am pretty healed. Is that normal?

Finally some answers and a plan of action. I tested positive for antibodies for both HSV 1 and 2. (Lucky me :-) The good news is that I am tolerating the lower dose of Acyclovir very well and my doctor assures me that we will get the outbreaks under control. Her goal is that the condition becomes something I no longer have to think about very often. And this is my goal too. If I can just go longer than a month without an outbreak, that would be a great start. Hoping for the best and grateful for a manageable condition. It could be so much worse. Thanks, all.

Ok, so here is an update. Today, finally got in to see my ob/gyn. And she did blood work! And she had an intelligent and compassionate discussion with me. She thinks my immune system is not behaving as it should also. So now I am on just one acyclovir (400 mg) a day for as long as I can stand it, for a month. The hope is the lower dose will be enough to suppress an outbreak and not enough to make me sick. I will have results of the blood test in a few days so I'll know which herpes it is, and that is important to me and to my husband. I went into the office upset and came out laughing so bravo for my doctor! The adventure continues…

Hahaha. Yes, I am going commando whenever I can and that is helping. This ob is mild--just one spot--and has not gotten much larger. I am using the acyclovir ointment (can't tolerate the anti virals) so I am celebrating a bit that it's not a major ob. At least I can sit. :-)

WCSDancer you are so right. I have been trying to just relax about it and it's working somewhat. And while I was relaxing there it was again! But I did not freak out, just put it on the calendar because I am trying to keep track, made another doctor's appointment and chilled out. I seem to have an ob every three weeks or so, which seems like a lot to me. But at least I am calmer about it.

Thank you @paullpaul. I was able to stay on the acyclovir for five days. After that I had to stop due to side effects. I am just waiting now for the next outbreak so that I can get a proper diagnosis. Have an appt with my ob/gyn so I am curious what she will say/do and whether she has alternative treatments in mind. Mostly though I would just like to get over the fear factor waiting for the next outbreak. I am trying to carry on as I did before diagnosis when I thought it was just a recurring rash, but it's depressing nonetheless. It's amazing how a one-word diagnosis can rock your world.

@ra1956 I would like to know what I have that's for sure. As soon as I have an answer I will update all. This site is a godsend, btw. Thank you.

Ok, so an update. Went to the infectious disease doctor--she was wonderful--but since I had no active lesions, she could not diagnose herpes for sure. She wants me to come back as soon as I have another outbreak so she can do a swab test. She said that a blood test is not worth much since so many people test positive to 1 and 2. Also now am on acyclovir (bad reaction to Valtrex) orally. This doesn't seem to be the usual pattern with herpes--it started very minor a few years ago--and now is getting more severe with each outbreak. I know I feel much more confident able to take the drugs. I still am reacting to the drug but less severe side effects. That's the story for now. I am just hoping to avoid the weekly outbreak cycle. It's a killer.

Ok, thank you, will do.

Valtrex-severe headache, nausea and hot flashes. In bed flat out sick. I told the doctor I would try again but (and I think this is her malpractice talking) she said she wasn't comfortable with me taking the drugs. I will try the L-Lysine 1000 mg. Is there a brand you recommend? I am a supplement skeptic but also, I am desperate. :-)

I am going to my ob/gyn in two weeks. I am sure she will test if I ask. And you can be sure I will ask. My hope in the meantime is that the infectious disease doctor has something she can prescribe that is not in the valtrex family of drugs. Anyone else have such a bad reaction to that med? I will also ask her for a shingles vaccination. I am 54 so even if it isn't shingles, it can't hurt, right? I do not understand why we don't yet have a cure for this virus. And Dancer, if you do go postal I am sure you will have a large supportive crowd behind you. Hey, I made a joke! That is progress. Thanks you guys, you are awesome.

Ok, so went back to the doctor (dermatologist). She would not do any testing and instead referred me to an infectious disease doctor. She says it doesn't matter which form of herpes it is, the treatment is the same and if I can't tolerate the usual treatments, she is out of ideas. So off to another doctor I go next week. In the meantime, my third outbreak in three weeks is totally depressing me.

Thank you for answering! I can't tell you how much it means to me. I am returning to the doctor tomorrow and will ask her to please test the area to see what it is. Maybe it's recurrent shingles if there is such a thing. Thanks again and I will keep you posted.