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Avatar universal

Herpes, worse than ever??

Hiya, hope you can help me?.
I have had herpes for 16 years now. The initial outbreak being typical, fever, spots,blisters on my genital area. Sore and painful. I was diagnosed via a culture (not that I needed such confirmation) it was pretty obvious. Back then they did not have a type test, so I'm unsure if its type 1or2? I presume its 2, since I only had genital, n
ot oral sex. (I am female) the question I would really like to know, is, I have had more ob's this year than ever before, and it is extremly painfull. Infact I have had one in feb, 1in may, and 3in august??? I have never experienced, so many in such a short space of time. I am more stressed out....but really? This many. I only ever used to have 1or 2 a year, usually they would just clear up themselves. Also this time round, they are always in a different area (genital) I do realise they move along the dermatone? So could be anywhere in "the boxer short" area. The question is, why have I had so many recently? The other thing is, they have all looked different. One episode was a cluster (small fluid filled ones) the other time it was just one (not fluid filled) more like a ulcer. Is this normal? Can they all look different? And be in different areas of the skin? Please help, as I'm not sure what is going on??? Thanking you in advance.
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Avatar universal
What were your first symptoms when you were diagnosed with herpes?
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Avatar universal
I am 55 years old and was originally diagnosed 33 years ago.. since menopause around the age of 43 the frequency of my outbreaks have increased exponentially.. and spread to other parts of my body.  Last year they increased to basically being back to back, as soon as one instance cleared up another started and in January I started getting headaches that just 'felt' like Herpes.... attacking my brain.  I started on Acyclovir once a day and the headaches went away for awhile as did the back to back outbreaks but after a few months the outbreaks returned .. and now the headaches have come back so I have to increase my dosage.  I am worried that these brain events have impaired my cognition.. I am almost 100% certain it has.  

My question... where does someone without good medical insurance and no primary care physician ( I get my prescriptions from an AMWELL doctor) go to get this cognition issue evaluated?
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Avatar universal
Aside from making certain there are no pre existing BVs, look at your diet.  Any changes such as  introduction of high containing arginine foods??
Nuts, (nut butters included) chocolate, oats, many protein powders, bananas.  
Nuts are certain to cause an OB for myself!
Helpful - 0
101028 tn?1419603004
I tried just doing episodic therapy back in the day and I was constantly  having to take pills and it ended up being less work to take suppressive therapy than to take pills for 5 days twice a month.  I come from a family where cold sores were non-stop for about 10 -15 years of their lives without medication so I really am not remotely surprised that my genital herpes behaved the same way ( ironically my experiences with cold sores were far less than the rest of the family who got them ).    I wasn't smart enough 20 years ago to know to haul my butt back to the office to get tested for vaginitis too so I'm not sure if that played any factor or not. It wasn't until about 8 years ago that I started knowing I had vaginitis issues. Whether I was having different bv issues back in the day and just didn't have the symptoms with it that I get now, I have no idea. I do know that suppressive therapy stopped the cycle of herpes no matter what was causing it.  

I've had more recurrences this year because bv is back again for me...sigh.  aging and changes in hormones has caused some dryness issues for me which when I allow my bf to perform oral sex on me, always leads to bv.  Did I mention how much my body hates me lately?  lol

If you don't have an active ob at the time of labor, the risk of transmitting the virus to the baby during labor is less than 1%.  for something to compare it to - the overall risk of a birth defect in general is 3%.   No reason not to have kids when you are ready to have them :)   My first child was a planned c section because they didn't allow you to take herpes antivirals back then while pregnant and I had ob's all through my pregnancy.  I tried to have a vaginal birth with the 2nd but after a day in labor we realized she had other plans so it was a repeat c section with her.  I had taken acyclovir throughout most of my 2nd pregnancy without my obgyn's permission/knowledge so I had less ob's and felt more comfortable with a vaginal birth with her.  

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Avatar universal
Hi Grace,

I must thank you, when I read your reply, it sure made me laugh! :)...thanks for that!

Do you think if you hadn't started suppressive therapy, you would have been alright? It seems to me that once you start, you body needs it to fight off the ob's? I can't believe you had 7ob's in 6 months, when you wasn't taking it. That must have been awful :(...I'm just worried that if I start to take it daily, I will always have to take it. Hope you don't think that's a silly question, lol! I just can't understand why I'm having so many, when I've only ever had 1 or 2 a year! Its typical!! Just when I think I've gotten through this, and its manegable, it bites back....!! Arrghh! This virus is ever so confusing. I think my body is hating me too now! Why do you think you have had more recurrences, whilst on suppressive?? Is that the norm, or is it just because everyone is different??
Also, at some point, within the next couple of years, I'd really like to have children, but am very worried about passing this on. If all precautions are taken, I'm sure the risk is low. Whatsa your opinion on having a natural childbirth?? My head has been in the clouds for 16yrs, and I've never really even thought about all the problems of having hsv2 can cause!!! I see you have kids, and that's great!! :)  
Helpful - 0
101028 tn?1419603004
suppressive therapy should be 400mg 2x/day while you are on suppressive therapy. When you think you are having a recurrence you can up it to either 400mg 3x/day for 5 days or 800mg 3x/day for 2 days and then resume your usual dose. suppressive therapy reduces ob's by 70%. So if you were having 10 ob's a year prior to suppressive therapy they should go down to 3 a year.    suppressive therapy only disrupts the viral replication process so you won't be "stuck" with being on it forever now.  If this is herpes going on, it should reduce your recurrences significantly. if it isn't herpes, it'll still keep going on and help you and your providers figure out what is going on better hopefully.

If you are getting ob's monthly while on suppressive therapy, definitely time for further evaluation to figure out what is going on.  

yes it does totally stink that we end up having to learn a lot about our herpes and end up educating many of our providers :(   I do that myself more than I should have to considering my care is given to me at a major teaching hospital here in the US.   I can tell you though that overall in my own job, I've learned more from my patients about many things than I ever have from a textbook though at the same time, it is my responsibility to know the basics and the treatments and I expect the same out of any provider who treats me. I have no problems giving my providers the "hairy eyeball" when they tell me something stupid about herpes....he he he  Simple enough to crack open the PDR and see the doses for herpes antivirals too which it sounds like you weren't even getting....sigh.  One more reason why electronic health records are so important - it gives the usual doses with the click of a button so that providers are getting it right more often!

Stress isn't a factor for most people according to studies.  It's as much about other things going on in your body, genetics and the inflammatory response of your cells.  So yes you can blame mom and dad a little for this one...he he he  

I myself am always on daily suppressive therapy.  About 1-2 years into being infected I started getting ob's frequently and at one point had about 20 of them a year.  Daily suppressive therapy with acyclovir took them down to about 3-4/year back then. Now that I'm older, I tended to only get 1 recurrence a year while on suppressive therapy. When I stopped suppressive therapy a few years ago for 6 months to participate in a research study on shedding of the virus, I had 7 ob's in 6 months so back on suppressive therapy I went as soon as I could!! I don't find my ob's more painful though in general they do annoy the heck out of me with their itching and pain when I urinate depending on where they happen to be.   Lately my body has been hating me in many ways so I've been having more recurrences even while on suppressive therapy thanks to my friend bv being an issue again for me.  I swear I woke up deaf and blind a little over a year ago and my kids swear I woke up dumb too.  I'm not a fan of this aging crapola....lol.  
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Avatar universal
Ps, I thought with time (16yrs) ob's occur less, and are not as painful!! This does not seem true :(....maybe stress really is a factor? Do your ob's seem less painful, as you have had it for 25 yrs. Or am I just one of the unlucky few?
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Avatar universal
Hi Grace, thanks for your reply. I have never had to take aciclovir tabs, as it always cleared up on its own, no problem! I am a little worried, cos I took a 5day course, it cleared up, then it came back, maybe a week later. If I start taking them daily, I'm worried I'll always have to take them? The only time I took tabs, was for my first ob.
Since this year with the many ob's I've had, I had to tell my doctor that I wanted to do the suppressive therapy, and what mg I wanted. The last ones he gave me were only 200mg, and only 5days worth. This time round I asked him for 400mg, and 3months worth. I also got him to refer me to a speacialized herpes clinic, as I have so many questions. Why did I have to ask??!! My worry is for all the people that get newly infected, they get misled,and not enough information is given (as this was my experiance). So this website-forum is amazing, and you guys do such a brill job, on actually providing real, honest and invaluble answers! It seems its up to the people who have it, to do as much research as possible ourselves. But then there are also so many scary websites out there. The stigma attatched is also a problem. No one ever talks about it, which is why its probably spread so much. I actually don't know anyone with herpes (hsv2).
Surely there are millions of people with it???? But no one chooses to talk openly about it. It is just a coldsore hey?
Anyway I am going to take suppresive therapy, and hopefully get this under control....1 more question for you, do you get many ob's whilst your taking suppressive therapy? I know it reduces shedding, but what about the actual ob's???
Thanks Grace
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101028 tn?1419603004
I'm going to assume that you really are female as your profile has you listed as with my advice.

Have you been back to your provider for any additional testing? As we gals age, our hormones change and things like vaginal dryness can cause us many issues, including BV ( bacterial vaginosis ).  bv has been shown to make herpes more active. It also can mimic herpes ob's too depending on what all you have going on genitally.  A looksee by a provider isn't adequate, they need to properly test you for yeast and bacterial infections vaginally.  

I also recommend going on daily suppressive therapy at this point to take the herpes out of the picture. If you are taking valtrex or acyclovir every day and you are still having these sorts of symptoms, you know it's more than just your herpes going on.   You can have herpes lesions in all sorts of locations. I know in the 25 years I've had hsv2, I can more easily tell you where I haven't had ob's than where I've had them at but they still have their "usual" locations to reoccur at for me.

grace
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