2 years of constant herpes outbreaks please help

[Tiredmommaj]

I’m breaking down, I appreciate your kind words. No I’m not on meds except antivirals and I’ve only recently started with homeopathic meds for immunity. I’ve had 2 babies since and lots of blood work which has not shown any other sti’s etc. I wondered if they missed that I have HIV bc in all the threads it says people like me usually have both infections. But I’ve been tested. 
Im otherwise healthy and hardly even get sick. I’m not Vaxed against Covid and it was only 2 days for me for the most part. Other than this I feel like my body can fight things. 
I have also wondered about birth control as I used to get them with periods now it’s harder to track bc it’s everywhere interchangeably. 
I will check with my Dr about a referral and more testing and some IV treatments. 
I know my family is better with me and I want to be here for them. I’m just scared for so many reasons that I feel I can’t control. I don’t feel strong anymore. 
thank you Grace ❤️
 

[Flowerteacher55]

Hello,

It sounds like it could be hormones, especially if you used to have outbreaks around your menstrual cycle. Sometimes even changes with menopause can cause extreme outbreaks as well. Getting your hormone levels evaluated could provide some answers ❤️. I actually went on birth control for emotional issues related to PMDD, and after a few months I actually did start to get better. I am really not a fan of medications and such, and I felt afraid to try birth control since I've never used it before but I am grateful I did. 

You may not feel strong, but please know that you are living proof of your own strength! You have so much going on but you are still trying and that is amazing. Challenge the negative thoughts and remind yourself of the truth; that you are beautiful, loved, and important. Remember that this is not your fault. You are not a burden to your loved ones. It may even be helpful to write your spouse a letter, and explain your feelings and how you do love him, and you feel terrible about this and want to show him love and affection in other ways while you work through your diagnosis and tests. A partnership takes two, and while he may want physical intimacy, there are infinite ways to show love and affection that both of you are comfortable with!  Your comfort and peace of mind are essential ❤️.

Something else that may help is reaching out to Terri Warren, RN, ANP, an HSV advocate and educator and medical professional. Also, instead of asking a question and paying for that, you can search through the questions that others have already asked/paid for: https://westoverheights.com/forum/herpes/herpes-questions/

We are here for you ❤️.  Reach out anytime! 

Sending blessings and prayers your way! 🌻

 

 

[Tiredmommaj]

Thanks for the link. I did listen to her discussion on your webpage link. In a way I find she responds like many general sites that talk about the disease. I feel like I’m my case and maybe others with it getting worse over time she’s not addressing that. Also she states numerous times once you have it it’s unlikely to spread to other areas but that’s not my case and I feel like others have said they get it in new areas over time as well. I guess I was hoping for more openness in her answers since she has seen so much with this. I don’t know maybe there is a specific thread that would pertain to me but they didn’t really speak to me.  I really am so appreciative of all other suggestions and will follow up with those. ❤️

[Flowerteacher55]

Hi!

I'm so sorry that the site didn't offer any specific support. I'm happy that the other suggestions were helpful! 

You're in my prayers ☀️🌈!

 

[Jayne00]

Hi everyone. 

It seems I am in the same boat as everyone on this thread. 

Its been 20yrs since diagnosis, I'm not on antivirals (and I don't want to given the risk of resistance), i don't drunk coffee now, I cut out all alcohol, nuts, peanut butter, chocolate.. I don't smoke, I exercise a lot, I've had my b12, folate, iron,  vitD, Mg, T4, TSH and white and red blood cells all checked. And they're all fine..

 

but the last 6 months have had continuous, unending flare ups.  

And feel like it's getting worse. 

Nerve pain all around thighs and buttocks, constant tingling, blisters coming and going, redness... 

 

Just wanted to see, has anyone in this thread had any improvement??? Please say yes as I feel I'm not going to be able to have a life or continue my marriage if this continues.... 

[ash128083]

Hi Jayne,

I haven’t been active on this forum for a few years now. The end of 2020 things started to get better for me and then I became pregnant in February 2021. My whole pregnancy and up until December 2022 was pure bliss for me. ZERO outbreaks. But then slowly but surely I started having issues again, occurring every 3-4 months, now I feel like it’s starting to happen monthly again. I’m slowly starting to spiral into a dark hole again. I just turned 39 yesterday and can’t help but think that I’m in perimenopause as I keep reading outbreaks will become bad during that time. I really think mine happen because of hormonal issues. It makes no sense that for 2 years being pregnant and post partum I was fine. Ive been on suppressive therapy since 2011ish. Nothing seems to help, although, I do feel relief when I use monistat for the week I’m flaring. It feels more like a yeast infection when it happens but I don’t think anyone can get a yeast infection that much. I never get a cluster of sores that are typical of the virus. I have an annual exam scheduled soon and it’s time to see an infectious disease doctor. I keep putting it off. This has affected my daily life tremendously. I’m at my wits end. Nothing makes a difference in terms of what I eat or supplements I take. A huge trigger for me is sex even if Im very lubricated. I feel bad for my husband because I constantly make excuses to avoid intimacy. I keep waiting for this new drug to come on the market, its in the end of clinical trials. Something has got to give.

[ashleytiffania]

@ash128083 I am in a very similar boat as you... I contracted GHSV1 about 5 years ago and had no issues until 8 months ago and since then I have had nonstop outbreaks. I believe having covid, not sleeping much, and having lots of sex created a HSV monster that won't go away. I have been taking vitamins b,c,d,e, zinc, and lysine, but have not seen improvement. I also get plenty of sleep and don't overexert myself physically. I have ruled out sex as a cause after abstaining for 2 months and still getting outbreaks. It seems that I have good days and bad days... one day will be symptom-less but then the next will be so unbelievably itchy until I scratch and am in pain and then the next two days will be fine and then the cycle repeats constantly. Do your symptoms present similarly? It seems more like yeast infection symptoms than traditional hsv, but I think it's a strange presentation of hsv. 

Your comment about pregnancy and hormones playing a role is very interesting. I've noticed that I get no symptoms while on my period, but during ovulation is particularly bad. I was thinking hormones or maybe because the menstrual blood lubricates it and prevents friction, but I'm not sure. I'm seeing an obgyn next week to see what can be done. My bf also has genital hsv1 (i sadly got it from him) and he has constant itchiness in his buttocks and perineum as well, but since he's a guy i'm wondering if that rules out the hormone theory.

Is there anything you've found to be helpful or any patterns contributing to your symptoms? How do you manage the itchiness? I tried withholding once from scratching and I think it maybe made things worse strangely. It's almost like I need to scratch and break the skin to rid my body of the virus... wild stuff. 

Please let us know what the infectious disease doctor says! This is no way to live and enough is enough. 

 

[ash128083]

@ashleytiffania Sorry for the delay in response. I only come on the forum when I have a flare because I spiral with anxiety. It’s been 2 months since I’ve had one and now here I am. 
 

I’ve been keeping track of these “outbreaks” so I can talk to my OBGYN in August when I go because this cycle I go through is destroying me. So I take 1gram of generic valacyclovir daily. When I start to feel any pain or itch I’ll take an extra 500mg and typically after a few days I’m ok. But then sometimes it gets worse and turns into a yeast infection type outbreak, sometimes this happens every month, sometimes every 4 months, sometimes every 2-3 months. It varies with no rhyme or reason. Before things got chronic for me, before my last pregnancy I noticed this would happen while I was on birth control pills so I got off of them and I didn’t have any issues for about eight years and then all of a sudden it was constant happening multiple times a month and after about a year and things calm down, it was almost always during my ovulation time which is what makes me feel like hormones are playing a big role in this. So I started increasing my medication a day or two before ovulation to try and keep it from getting really bad and that started helping and then I got pregnant and pregnancy and up until a year after was pure bliss. No infections, no itchiness no symptoms whatsoever I could have sex with my husband with no issues. And then once my daughter turned one I noticed it happening again. I’ve tried supplements vitamins lysine cutting out coffee cutting out alcohol cutting out sugar makes zero difference for me. Extremely frustrating because I can’t get to the root cause of why this is happening so much. I was diagnosed almost 18 years ago and everything you read and every one who talks about this says it decreases with age, etc., and it’s just complete utter bullshit. I think sex is a big trigger for me. I need to be really careful and pay attention to my body. If I feel any sort of itch or anything and have sex, it will turn into something worse in a few days. So last week I had sex with my husband Sunday and Monday I was OK and then I started to feel a little discomfort Thursday, but nothing crazy and we had sex again yesterday I knew it was going to happen. It feels like a full-blown yeast infection, internal and external itchiness, irritation, redness, no sores, so I ordered Monistat 7 at the store which I always do and i’ll take 2 g of the medication for a week and by day seven I’m fine which again makes no sense. For some reason. I feel like the monistat helps the itching. I wont scratch it ever but I want to rip my vagina off. I don’t know if my birth control pills are making it worse again but then when I get off them, I feel like it happens anyway. 
 

I haven’t seen the infectious disease doctor yet, but I’m going to ask for a referral from my doctor when I go. I don’t know if they’re going to be much help. I’ve made friends with someone on this site who has gone to one and they didn’t do much either, I feel like people like us very rare in the case with the virus so doctors don’t really know what to do because it’s not typical from their textbook learning or something else has to be going on to make it worse. I don’t know if my inhaler is from having asthma do something to my immune system but it’s like nothing I do can fight this virus off. Shouldn’t be happening this much while on the medication unless it mutated or I have resistance now my doctor says it’s rare unless you have something like HIV which I do not have. My husband has never presented any symptoms and we’ve been together for 13 years. It doesn’t make any sense but it’s completely frustrating and I’m so sick of living this way as I’m sure you are.