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I was diagnosed with GHSV about 10 years ago. I’m not sure if is GHSV 1 or GHSV 2. For the past almost 8 years I have been on daily suppression of acyclovir 400mg 2x a day (I initially started with 200mg 2x a day and even the low dose worked. For about a year now I have been getting chronic outbreaks. They even seem to be worse now then when I was first diagnosed. In the beginning I would get one typical blister that would come out and eventually heal over. While on antivirals it pretty much eliminated my outbreaks (except when I was on birth control pills, then I would get what I thought was an outbreak but felt more like a yeast infection about every 4-5 months. I’ve been off birth control for about 4 years now.) Last year I started to get occasional sharp pain or irritation in my vagina. I figured it was prodome symptoms and increased my acyclovir to 3 pills a day for a week. After a few months of this happening I had what I thought was a very bad yeast infection. I got over the counter medication and increased my antivirals just in case it was an outbreak. I didn’t have any visible sores just a lot of irritations, discomfort and redness. I couldn’t walk at times because it was so uncomfortable. This has been happening about every month now for a year, sometimes twice a month and almost always during ovulation. Last year I was on prednisone for my asthma a few times (and have been in the past without any herpes flare ups) and wasn’t sure if this somehow reactivated the virus. I went to my doctor in August and he thought where I wasn’t having typical sores perhaps I keep getting yeast infections for some reason. He changed my antivrial to valacyclovir 500mg 1x a day (which after doing some research and taking it for a month I know that the effective dose for a healthy person with more than 9 outbreaks a year is 1mg 1x a day. In the month of October I tried take 1g a day and that month I had nothing occur down below, which makes me think these yeast infections could be outbreaks even though I get no sores and almost always the pain, reddness, discomfort and irritation is inside my vagina (sorry if thats tmi). Two weeks ago while ovulation I had an “infection”, I’m 4 days late for my period (not pregnant), have been on antibiotics for  5 days and woke up this morning with extrmeme discomfort, redness and irritation out of no where. I’ve stopped the antibiotics, started probiotocs, increased my acyclovir and lysine intake (I usually take 2-3g daily). I made an appt with my primary care on Wednesday and have an appt with my GYNO on the 10th. I’m not sure which doctor I should even see at this point (my GYNO) prescribes me the antivirals). I’m going to ask to be put on 1g daily valacyclovir and see if that makes a difference. I’m debating on having other tests done to rule out immune disorders etc. Does anyone have this problem? I thought the virus becomes naturally more suppressed over time the longer you have it? Does anyone see an infectious disease doctor for their HSV? I’m a 33yr old otherwise healthy female. I exercise 5x a week and eat well. Sleep could be better but I have two children. This is really taking a toll psychologically on myself and my marriage. Any advice would be great.

 
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Hey there! I hope you get some responses to your post because I’m in the same boat. I’ve had this for over 20 years and I have constant outbreaks despite being on Acyclovir 400 mg twice a day. It’s never been this chronic and I also thought it was supposed to get easier the longer you have it. It’s the opposite for me. I am also healthy with exercise and eating. I’m about to change meds but am doubtful that will do anything for me. It’s extremely discouraging. I liked my ‘old’ h life so much better. I can barely get a day where I don’t have symptoms. It sucks. Just wanted to say you aren’t alone. 

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You sound a lot like me, I've had chronic yeast issues usually around the same time every month, but I'm finally getting it under control. I took so many Diflucan over the years I think I'm resistant to it now. And I haven't had an outbreak since switching to Valacylovir 500 mg a day. Acylovir never worked for me and made me very tired for some reason. Also, I switched to a menstrual cup instead of tampons and pads and that has been a godsend. It keeps everything much cleaner, drier, and outbreak free. Another godsend is boric acid suppositories, they wipe out not only yeast but bv as well if you're prone to that. They are NOT for ingesting orally but inserting vaginally for a few days to up to 2 wks depending on the severity of the infection.  The most I have to use them is 3 days and the relief is amazing.  I also take Queen V probiotic, which has other antiviral and anti yeast ingredients like garlic, turmeric, and grapefruit seed extract. The symptoms of yeast and herpes are similar, but most outbreaks would have at least one sore as well as intense tingling prior. But doing all of these things as well as wearing loose cotton underwear has helped me immensely.  If I ever feel "off" I pop in another suppository and I get relief quickly.  I of course wouldn't use boric acid WHILE having an outbreak, because you definately don't want it in your bloodstream. But for chronic yeast and bv, its a miracle cure.  Hope this helps and good luck!  

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Please chronic sufferers I was also on the same boat of having constant issues after 10 years this is a very common problem but it’s understudied and misunderstood by doctors grossly! They should be reprimanded for their lack of brains and thoughts past what a general google search will give you.  

So please ladies I ditched conventional meds because they are no use but I went with traditional chinois medicine.  Look up the efficiency and help acupuncture and the chinoese medicine provide.  I was 5 years of suffering until I started with TCM.  I also found that I had a skin condition in conjunction with GHSV so that also needed to be addressed and that was done with my pcp ( there are vulvar conditions that mimick H to a T and most doctors over look them if you say herpes first) the skin conditions say they are rare but I have a suspicion that h triggers A LOT of other things and this could be one.  (For instant lichen sclorosus= extrem itchiness, burning aching sensations, lesions, and also is triggered by period sex and alcohol) so please make doctors look beyond the HSV diagnosis  

ohh and also my God send was red marine algae( I want to mention this one pill because I’ve essentially dropped every for this.  I’ve tried ozone thereapy (soo expensiv) perioxode protocol, bht protocol, and just about every vitamin so if this one stands out take my 5 years of suffering and researching for your advantage and get it.  Also please find an acupuncturist 

and @grace78 this journey has made me count my blessings and appreciate when my H was just a after thought.  The 5 years battle def took me to some really low lows but with God and a lot of research I feel like my old H life is on its return and I’m grateful for that.  

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It frustrates me when I read so many posts that say ‘it gets better with time’. Mine is worse....so much worse. I will look into the red marine algae as I will try anything at this point. How do I go about finding someone that is trustworthy in Chinese medicine? And do they treat you the same as regular doctors ( skip over the topic or avoid it at all costs?) 

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@Sadpanda @Grace78 @beBravebeBOLD This is the first time I have joined a forum and talked to others with the same condition. I have felt so alone for so long. I am trying my best to get the support I need. I don’t want this disease to control my life. I just confided in my best friend of 28 years about this (she gets real bad cold sores so I felt like she could somewhat understand). I was in such fear of how she would react and she thinks that it’s not a big deal, it’s not deadly, and to go to whatever doctor I need to to try and get these symptoms under control so I don’t have to suffer constantly. She thinks my husband and I can work this all out but I’m so scared he’s going to leave me and I don’t know how to tell him. I have been in such horrible pain and discomfort, itching both internally and externally, not to mention I have my period and wearing a pad I think has made this all worse. I’ve increases my acyclovir to 4-5 a day in addition to using monistat and usual vitamins and supplements idk what is working and what’s don't. I can barely walk or do anything with my children. It’s been extremely debilitating. Why would this virus all of a sudden go haywire? Do your doctors have ANY answers? I see my therapist, PC and OBGYN next week and I’m so stressed over it. If they can’t help me I’m going to get a referral to an infectious disease specialist. Something HAS to help. I’ve also noticed with all of these symptoms I’ve had a problem with vaginal dryness. I wish someone could find a vaccine. I don’t think these doctoes understand just how physically and mentally disabling this virus is. I hope once has past I can get back on the 1mg of valacyclovir. The one month I did that out of the past 12 I was symptom free. 1 month out of 12! No one shouls have to live like that. Are any of you in relationships?  I’m having a real hard time disclosing to my husband (horrible I know, we’ve been together for 8 years and have 2 kids, I never had symptoms or outbreaks being on the meds and never said anything because I didn’t know how, we were never supposed to be in a relationship and ended up getting pregnant very early and our son passed away shortly after birth, so I never knew when or how would be the right time. When these symptoms startes coming back a year ago I started making him use condoms while continuing my meds and I completely abstain when I start feeling off. He knows something is going but doesn’t know what and I have no idea how to do this now. I’m petrified this will tear my family apart and it’s my fault. I hope mu therapist next week can help me. I’m definitely getting the red marine algae to try and I also read that lauricidian (monolaurian) or something like that is supposed to help. Both are pricey but at this point I’m desperate. Thank you all for commenting. It’s comforting to know I’m not alone.

 

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New to this forum, and me too :(. Was OB free since my primary ghsv1 many years ago and all of a sudden I have prodromal symptoms that are not going away. I think it was reactivated with sexual activity after being long celibate. Tested negative for everything else and no OB's but still, this is almost worse because there are no answers. Have tired everything. Just started Monolaurin and was already looking into getting red algae and acupuncture. I've seen my primary care Dr, 2 Gynecologists, and an Infectious Disease Doctor and all say the symptoms are not HSV related because it's lasting this long. Trying to say it's just in my head/stress and it will go away if i relax. I know prodromal nerve/leg pain, i'm not imagining it. I agree with @beBravebeBOLD, the shared experiences and related literature all ALL OVER the internet. And it's crazy at this point in time, there's no solutions to alleviating prodromal symptoms. Will follow this post. I'm devastated about this... Question -- do we think we are highly contagious at this time? Has anyone passed it on during? Since the Dr's say to me that it's not an HSV prodrome they think I can continue with intimacy but I am terrified I will absolutely pass it on. Devastated with no end to this in sight :(..

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I don’t know why doctors aren’t researching this more and listening to their patients and trying to come up with betyer medicine/vaccine...anything. I feel like it’s not a priority because this virus won’t physically kill you, but mentally it really takes a toll. I feel like I am more infectious than ever because of the constant symptoms. I never want to be intimate with my husband, even without symptoms, even using a condom because I am in such fear of passing this on to him. I can’t enjoy sex anymore because I’m so paranoid. Hopefully my doctors give me some answers this week and I can share them with you.

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ash128083 keep us posted on what your docs say this week. I have considered going to an infectious disease specialist, but want one that has actually treated patients like me. My OB just skates over the topic so I don't feel like she's even an option to discuss this with. It frustrates me SO much at this is still such a 'taboo' disease. I was a virgin when I contracted it through oral sex. It infuriates me to this day, but I know there is no good dwelling on the past. I really believed for many, many years that I didn't actually have it because I never had outbreaks after the initial one. I seriously miss those days. I wouldn't care that I have it, if it would just stay hidden away like it used to. I started on the Red Algae per BeBraveBeBold's suggestion. Pricey is right...but I will try anything at this point. I don't know whether to keep up with the Acyclovir in addition, or stop it (since it's not working right now anyway). 

Sadly I think our only hope is in a vaccine or CRISPR but who knows how long it will take to get those out to the public. Why on God's green earth does it have to be this difficult to find a cure? I mean could you guys even imagine what it would feel like to be rid of this forever? It's become a dream for me which is pretty pathetic. 

Faith8 I have always avoided intimacy when I have prodrome. I hate it, but also live in total fear that I will pass it to my husband. He knows about it, but we never talk about it...I just can't. Probably TMI but I've gotten good at oral sex as an alternative. But since I can't seem to get a good stretch without symptoms, our love life has definitely suffered. It's sad that I can never really know what it's like to be completely just a lover with no side worries. I hate it so much. I wish you all lived in my town so we could gather and have coffee and support each other. Glad we at least have this. Ash128083 I'm so sorry to hear about the loss of your baby. I lost my first also.  😞 She was stillborn at full term. I was taking Valtrax at the time and always will wonder if that had something to do with her death. Probably not, but it's guilt that I have carried for almost 10 years. I think with all you and your husband have been through, your relationship can handle this. I hope your therapist can help you navigate the conversation. 

 

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I appreciate everyone on this forum ❤️ I’m happy we have a community.

@Grace78- acupunture ( TCM-traditional Chinese medicine) has a 90% success rate for healing.  And TCM is very knowledgeable about herpes.  The herbs and techniques saved me. This is also where I was introduced to the algae.  I believe any metro city has reputable acupuncturist.  Also, my tcm has never been anything other than knowledgeable, supportive and helpful.  Each treatment I was met with new ideas and things to help me and also just tons of mental and emotional encouragement because they believe in healing the entire person.    

- the medical community has failed all of us!! They are no better than a webmd search that we can do on our own.  They are stuck regurgitating outdated inaccurate information and it makes me sooo mad.    

 @Ash or anyone else who can chime in.  Idk how contagious we are I’m just paranoid all the time.  I feel like I was paranoid even when I had no symptoms.  I did have protected sex (during a point when I felt better than not) and my partner never got it. He and I also had an unprotected night. (Drunk accident).

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Grace78 I am so sorry to hear about your loss. When I was pregnant with my 1st boy we found out he had a congenital defect and would most likely not survive. I was on acyclovir at the time and thought that contributed to the defect. My doctor reassured me that tha antiviral is very safe to take during pregnancy but I know what you mean. I still think about it. I went on to have a healthy baby boy a year later (still taking antivirals during that pregnancy as well). My husband and I are currently looking to buy a house and want to have another child but I feel like that’s never going to happen because I won’t sleep with him without using a condom and I always make excuses. I have also become the “blow job queen”. I feel super guilty about not wanting to have sex with him and try to do than stand to at least keep them satisfied but it hurts me so much that I can’t love my husband, and be intimate with him because of this. The only thing I can think of that has caused my virus to spiral out of control is from being on prednisone so much in the past year for my asthma. I found a post on here from a man who is experiencing the same thing from being on the steroid. I had no idea that I could awake in the virus, but one would think after coming off the medication and starting to build up your immune system again the antivirals would help suppress this thing. I can’t imagine being an elderly woman and suffering from this like I am now. My primary care doctor doesn’t even know that I have this my gynecologist is in a separate medical facility and  I was always so embarrassed to tell her. I always feel like I’m being judged. I wish more people would communicate about this disease and talk about it, because I feel like so many more people have it than what the statistics say. They won’t even test you for this and less you specifically asked not to mention people who don’t have symptoms and have the virus or who are too scared to get tested. I don’t know why there’s such a stigma.  I wish we could all be like oh I have herpes, so do I  ::high fives:: so at least we wouldn’t be made to feel so awful. I’ve been on anxiety medication on and off since the death of my son and up until recently I have had to take the anxiety medication almost daily because of what this virus does to me mentally. 

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@Grace78 @Faith8 @beBravebeBOLD Well I FINALLY told both my therapist and PCP about my HSV and it felt like such a weight being lifted off my shoulders. My therapist even told me that not only has she oral herpes outbreaks but she’s also had a vaginal herpes outbreak about 20 years ago and hasn’t had one since. It made me feel a lot better but thought to myself “well you’re lucky.” The more I think about it the more I believe that a lot more people have the virus than what all the websites state. Of course it feels like less of a big deal when you’re symptom free. My PCP said that in my case she thinks the prednisone use wekeaned my immune system and where I get sick a lot I need a higher dose of the valacyclovir to get it under control. She doesn’t think I have any underlying issues or resistance at this point and said to give it several months on the 1 gram dose and see if theres a difference. She also took a culture to rule out a yeast infection. Where I just finished the Monistat 7 she said it didn’t look like one but that could’ve cleared it up. She didn’t say that it looked like I was having an outbreak either, so I’m not sure what it was. I started my first dose of the 1g valacyclovir today so I’ll see how it goes. I feel an occasional itch or prickle feeling on and off today and I can’t stop thinking about it. It goes away but I dwell on it andI swear it makes it worse. Maybe us tormenting ourselves over this is making the symptoms worse, but its so hard not to. I ended up cancelling my appointment with my OBGYN. I figured I’d wait and see if the new dose helps. Fingers crossed. I haven’t had sex with my husband in almost 3 weeks and I’m so scared to. He still doesn’t know I have this! I’m so scared and ashamed that I have let this go for so long. It’s eating me alive. I see my therapist again next week to help me come up with a plan for telling him. I’m so lost. How did you all disclose to your partner? 

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2 hours ago, ash128083 said:

@Grace78 @Faith8 @beBravebeBOLD Well I FINALLY told both my therapist and PCP about my HSV and it felt like such a weight being lifted off my shoulders. My therapist even told me that not only has she oral herpes outbreaks but she’s also had a vaginal herpes outbreak about 20 years ago and hasn’t had one since. It made me feel a lot better but thought to myself “well you’re lucky.” The more I think about it the more I believe that a lot more people have the virus than what all the websites state. Of course it feels like less of a big deal when you’re symptom free. My PCP said that in my case she thinks the prednisone use wekeaned my immune system and where I get sick a lot I need a higher dose of the valacyclovir to get it under control. She doesn’t think I have any underlying issues or resistance at this point and said to give it several months on the 1 gram dose and see if theres a difference. She also took a culture to rule out a yeast infection. Where I just finished the Monistat 7 she said it didn’t look like one but that could’ve cleared it up. She didn’t say that it looked like I was having an outbreak either, so I’m not sure what it was. I started my first dose of the 1g valacyclovir today so I’ll see how it goes. I feel an occasional itch or prickle feeling on and off today and I can’t stop thinking about it. It goes away but I dwell on it andI swear it makes it worse. Maybe us tormenting ourselves over this is making the symptoms worse, but its so hard not to. I ended up cancelling my appointment with my OBGYN. I figured I’d wait and see if the new dose helps. Fingers crossed. I haven’t had sex with my husband in almost 3 weeks and I’m so scared to. He still doesn’t know I have this! I’m so scared and ashamed that I have let this go for so long. It’s eating me alive. I see my therapist again next week to help me come up with a plan for telling him. I’m so lost. How did you all disclose to your partner? 

@ash128083 if you don't mind me asking do you have type 1 or type 2?

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@ash128083 so glad you opened up to your doctors! You shouldn't be embarrassed, that's what they are there for. Next step is your husband 🙂. I stopped 500mg valacyclovir last week because I was curious if it the prodromal sensations were actually heightening on it. It seems to be less now, not gone but less. Also, I get almost immediate sensations if I eat anything with the slightest bit of sugar. It freaks me out...and makes me feel like the virus is fully alive and active. Anyone experience this? I told my Gyn all of this and she looked at me like I was nuts and said "maybe there's a new disease out there then". That's not funny... and if so... it should be researched more as so many people are suffering! 

Why isn't it retreating! I'm growing more and more depressed...it's been just a few months now, I can't imagine years. Debating if I should try Valacyclovir again but 1g as you are. Let us know how it goes.

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