GHSV1 and menstrual cycle

[lara93]

Hi everyone,

 

I was diagnosed with GSHV1 7 months ago, although I suspect my first OB was 8 months ago. I wasn’t given much help or advice from the medical centre I used, they just told me it was a positive result, to tell my partner and not to worry?! Consequently I’ve had to research it on my own, with the help of forums like this and medical websites. What is really confusing me is the number of OBs I’m getting. I’ve had 10 in the past 7 months. Each time I never get the pain or burning that people talk about. I usually get one or two tiny spots which sometimes bleed, then blister over in a few days. I don’t get any of the warning signs, like feeling fluey or feeling a tingling feeling up my leg. I’ve recently cut out alcohol and that has reduced the number of OBs from 1.5 to 1 per month, so I feel positive that I’ve identified alcohol as an aggravating factor. I also take 1000mg vitamin C, 25g zinc, 1000mg lysine and sometimes a multi vitamin if I’m feeling run down. I’m also on thyroxine for hypothyroidism (100mg/day). I suspect the OBs are linked to my menstrual cycle as they usually occur at the same time each month (1 week before my period). I do suffer from quite severe PMS (feeling very down and irritable, very sore breasts, extreme fatigue) so perhaps it is linked to this.

 

I have read that periods can bring on herpes outbreaks, but so far I haven’t found any information about whether anything can be done about this. Has anyone had a similar problem? Someone on here mentioned Chinese medicine but didn’t mention what that involved. I’m really desperate to try and get these OBs under control. I didn’t expect that they would be so frequent, given that the recurrence stats for GHSV1 are so optimistic. My main concern is passing it onto my boyfriend. We are always careful but it’s very hard to manage when I get none of the warning signs, and sometimes the 'spots' are so small that they have almost healed over by the time I notice them, so I could be putting my boyfriend at risk in the days prior to finding them.

 

Any advice would be SO appreciated. I’m still quite new to this and my biggest hurdle has been getting over the emotional strain of it. I fully accept it now and I try not to let it get me down. Forums like this are so brilliant and reading other people's stories gives me so much strength. I just want to be able to know how to manage my trigger so that I have a little control over it.

 

Thank you :)

 

[optimist]

I have a friend with GHSV1 who gets outbreaks with her periods and in times of high stress.

 

If you're using a form of hormonal birth control, maybe you could try a different type to see if it makes a difference? And if you aren't taking daily antivirals, you could give those a try. Or maybe take them for the days leading up to your period if you'd rather not take them daily? Not sure if that would work.

 

Also, is it possible your boyfriend already has HSV1? Has he ever had a cold sore? Most adults have HSV1, so he may well have it already.

[lara93]

Hi Optimist. Thanks for your reply :)

 

I'm actually not on hormonal birth control at all so it can't be that. I also tried suppressive therapy for 1 month, and suppressive therapy in the 10 days before my period: I still had OBs at the same frequency and they didn't heal any more quickly than without the antivirals... very frustrating! So the conclusion I've arrived at is that alcohol and hormones are my triggers. I can control my alcohol intake but I just don't know if I can even do anything to prevent hormone-induced OBS.Does your friend take any supplements to help control her OB during her periods, or has she learned to manage them better somehow?

 

P.S. No, he has actually never had a cold sore so as far as we're both aware, he doesn't have HSV1 (although always a possibility, as you say).

[optimist]

Hm. It's unusual for antivirals to be ineffective. I wonder if a different antiviral might work better? Or a different dosage? Just wondering. I'm not a medical professional but I've seen posts from people who've had better luck with one antiviral over another.

 

My hope for you is that the frequency of outbreaks will diminish with time. For people who get recurrences, I think the first year is usually the worst.

[lara93]

Yes, perhaps that's worth a try. I think the problem is that I never get the 'warning signs' so by the time I start the meds, the virus is already active (I've read that they are most effective when you take them within the first few hours of symptoms).

 

Thanks very much for your advice. I hope so too!

[optimist]

Maybe an option would be to take the lower dosage meant to reduce transmission on a daily basis, then increase to the suppressive dosage if/when you experience symptoms. I know Terri Warren generally recommends starting at the lower dose and increasing to the full dose if the person finds they are getting breakthrough symptoms. For instance, with Valtrex, this would mean 500mg (transmission reduction) vs. 1000mg (symptom suppression).

[lara93]

I hadn't heard of that or thought of that actually, so I will try that this month and see if it helps. Thanks!

[HikingGirl]

I'm convinced my OBs are hormonal as well. Valtrex didn't do squat, but acyclovir has been awesome.

[lara93]

That's good to hear. I'm glad you've found something that works for you :)

 

I'm sure lots of women must go through this. It's just a shame that there doesn't seem to be much medical information on how to deal with hormonal OBs other than taking valtrex/acyclovir. Acyclovir has done nothing for me in the past so it feels frustrating to have no control over my OBs.

[ash2018]

Hi there! I have only been diagnosed for a couple of weeks but my first outbreak occurred after finishing my first pack of a new birth control pill and starting my period. I had been switched to a pill with different hormone levels as I had developed a large ovarian cyst on my previous pill. I often wonder if that had something to do with why the outbreak occurred. I have positive IgG levels so I have had the virus for a period of time and never had an issue before. After my second pack I was taking a large dose of valtrex to treat the previous outbreak, thus I didn't get an outbreak on my period then, but I wonder what will happen when I finish this pack. I am also now on suppressive anitviral therapy so I wonder if that would prevent it from happening anyways.

 

So many thoughts! If I do notice them to be hormone related I will ask about switching pills. I'd much rather have an ovarian cyst then an outbreak every month!

 

Maybe they can start you on suppressive anitvirals instead of episodic (taking them only when you have an outbreak) and see if that helps? If not, then maybe they could do that AND start you on birth control to see if regulating your hormones helps.

 

Just some thoughts and letting you know you're not alone in trying to figure this out!

 

Also, your boyfriend could still have HSV1 even if he's never visibly had a cold sore. Having him tested could be helpful to figure out a *possible* source or just to know if he carries the virus as well. My fiance got tested yesterday so I am anxiously awaiting those results!

[lara93]

Hi! Thanks so much for your reply and sharing your experience. I hope the suppressive antivirals work for you :) . If not, you have the option of switching pills, as you say, so that sounds positive!

 

I have tried both suppressive and episodic and acyclovir seemed to do absolutely nothing for me, even though I was on a high dose (perhaps switching to valtrex would be a good thing to try). My body usually fights it quite well for 3 weeks of the month and if I abstain from alcohol, I never get an OB other than during the week before my period, so I’m almost certain it is a hormone thing. As for birth control, I took the pill for many years but stopped taking after a certain age on the advice of my doctor. That’s why I’m wondering if there are any alternative therapies for limiting/preventing hormonal OBS, because I can’t rely on a hormonal contraceptive OR acyclovir apparently...

 

Good luck with the test results :)

[ash2018]

I would definitely give valtrex a try, like you I've read about people having different experiences on the different antivirals. And if that doesn't work, there is a third called famvir (I think that's the brand name) that could be tried as well!

 

And thank you!