2 years of constant herpes outbreaks please help

[TreeHugger44]

Hi everyone. 35 year old Female and I have GHSV as diagnosed by my doctor even though all my IgG tests are always negative. We are both convinced it is herpes as is another doctor but my lesions don’t have a lot of fluid to swab and I am scared to go off antivirals at this time to test accurately. 

Anyway, I kept thinking it would get better and it doesn’t. I am having an outbreak so painful now I want to scream. I have been taking Valtrex 1gm daily for 5 months with zero relief and sometimes I take 2 1gm pills a day during an OB. I do think it has helped decrease the severity of outbreaks (bumps are smaller and less blister like but still lots of then all over my bump and sometimes thighs or public hair line) but not frequency. 

Anyway, is it normal to have outbreaks basically every week?? Like I had one early August which I thought was finishing up only to get worse Aug 12. That cleared up and led to another one Aug 24, and now Sept 6 I having a horrendous one. What do I do?? Try switching to a different med? Is my herpes resistant?? I am a single mom so how will I ever date again?? It feels like disclosure is a non issue when you don’t even have 2 symptom free and or bump free days to have intimacy. That would scare someone off for sure. To top things off I get tons of itching and burning in my nostrils and chin too and a sore throat to boot. Like I can’t live like this, it’s intolerable. 

Anyway just looking for suggestions and support, thank you so much!!

[Worriedgal89]

That sounds awful I am sorry you are going through that, I'm also suffering constant outbreaks . I would recommend speaking to Terri Warren , an expert on the topic , on her website Westover heights . You can pay to Skype her or to ask a question . She has spent 33 years studying herpes and will give you some insight. Were you treated immediately with antivirals right after your first outbreak ? Or did you wait a while and then get the IgG test ? Anyways please talk to Terri Warren she is very helpful , it usually takes her about 5 days to respond 

[Worriedgal89]

Certain bacterial infections can also cause blistering 

[leagueoflegendsguy]

How is your diet? You could be eating or drinking something that could be causing recurrent outbreaks.(Coffee, chocolate, nuts)

Stress can cause it.

Do you sleep well?

Watch out for alcohol and cigarettes (if you do drink or smoke.) 

[no_joyride]

On 9/12/2019 at 5:29 AM, Worriedgal89 said:

Certain bacterial infections can also cause blistering 

Dear Worried

Do you know more about this?  I have recurring OB that anti virals seems to keep at bay but my numbers for my IGG test is very low.  I can't swab for HSV because of where I live and I did have my first OB swabbed for bacteria and that was negative.

 

[ash128083]

@TreeHugger44 I can completely relate to you! I am losing the will to live and am trying to be strong and fight through the constant outbreaks for my two children who need me to be here. I’ve had GHSV for about 10 years and in the beginning it was no where near as bad as it is now and all I read is this is supposed to get better. Crock of shit! I was on suppressive therapy for 8 years and it worked wonders until about 2 years ago the meds just stopped working without any explanation. I’m 34 now and have been living in hell for 2 years. I switched to 1g valacyclovir in January and got some relief for about 8 months but now again I feel like every 2 weeks I’m getting outbreaks. I double up on the meds so nothing ever breaks through the skin but I can see and feel them under the skin. It makes it so hard to enjoy life. I am constantly irritable to my children and family. I don’t know what else to do. I made another appointment with my OBGYN and am going to ask for a referral to an infectious disease specialist. I’m at my wits end. Resistance to antivirals is so low but for some reason I feel like I’m in that .03%.

[benzgtx]

8 hours ago, ash128083 said:

@TreeHugger44 I can completely relate to you! I am losing the will to live and am trying to be strong and fight through the constant outbreaks for my two children who need me to be here. I’ve had GHSV for about 10 years and in the beginning it was no where near as bad as it is now and all I read is this is supposed to get better. Crock of shit! I was on suppressive therapy for 8 years and it worked wonders until about 2 years ago the meds just stopped working without any explanation. I’m 34 now and have been living in hell for 2 years. I switched to 1g valacyclovir in January and got some relief for about 8 months but now again I feel like every 2 weeks I’m getting outbreaks. I double up on the meds so nothing ever breaks through the skin but I can see and feel them under the skin. It makes it so hard to enjoy life. I am constantly irritable to my children and family. I don’t know what else to do. I made another appointment with my OBGYN and am going to ask for a referral to an infectious disease specialist. I’m at my wits end. Resistance to antivirals is so low but for some reason I feel like I’m in that .03%.

Unfortunately it's not the 0.3%. The reality of the pain we're all going through has an explanation. The virus like everything else on this planet goes through evolution and builds up resistance with time. Our immune system is very clever but unfortunately gets exhausted with time from fighting the virus and the virus continues to try to find ways to escape the immune system until it eventually succeed. Now this doesn't happen with everyone obviously but as I am reading in this website A LOT of people after 5 years time start to experience even worse symptoms than what they had before. I haven't hit that milestone yet but I am dreading it already since I have continuous symptoms now so I can only imagine how much worse things will get. 

There is hope with a new vaccine against HSV2 that was announced to have 98% success rate in mice. May I ask what type do you have? 

 

Feel better 

[ash128083]

13 hours ago, benzgtx said:

Unfortunately it's not the 0.3%. The reality of the pain we're all going through has an explanation. The virus like everything else on this planet goes through evolution and builds up resistance with time. Our immune system is very clever but unfortunately gets exhausted with time from fighting the virus and the virus continues to try to find ways to escape the immune system until it eventually succeed. Now this doesn't happen with everyone obviously but as I am reading in this website A LOT of people after 5 years time start to experience even worse symptoms than what they had before. I haven't hit that milestone yet but I am dreading it already since I have continuous symptoms now so I can only imagine how much worse things will get. 

There is hope with a new vaccine against HSV2 that was announced to have 98% success rate in mice. May I ask what type do you have? 

 

Feel better 

I don’t know if it is type 1 or type 2 but it comes out genitally. My doctor swabbed a lesion years ago but never said which type it was and when I asked he said it “didn’t matter, they both present themselves the same way.” Very frustrating. Where did you read about a new vaccine? I pray to God for one every night, a vaccine, better medication, anything to alleviate the constant physical pain. Every thing the old textbooks say to do to combat this I do religiously, eat well, sleep, exercise, the supplements, nothing helps. After finding this forum and realizing that there are so many of us experiencing this you would think that the doctors would start listening and trying to find a way to help us instead of just brushing us off. I’m hoping an infectious disease specialist can help me. I’m starting to worry that there is something severely wrong with my immune system.

[benzgtx]

15 hours ago, ash128083 said:

I don’t know if it is type 1 or type 2 but it comes out genitally. My doctor swabbed a lesion years ago but never said which type it was and when I asked he said it “didn’t matter, they both present themselves the same way.” Very frustrating. Where did you read about a new vaccine? I pray to God for one every night, a vaccine, better medication, anything to alleviate the constant physical pain. Every thing the old textbooks say to do to combat this I do religiously, eat well, sleep, exercise, the supplements, nothing helps. After finding this forum and realizing that there are so many of us experiencing this you would think that the doctors would start listening and trying to find a way to help us instead of just brushing us off. I’m hoping an infectious disease specialist can help me. I’m starting to worry that there is something severely wrong with my immune system.

It's unlikely that something is wrong with your immune system (by the way I thought exactly the same way and went to see an immunologist for it and all was disappointingly normal) it's just the nature of this viral infection that this forum deem as a "skin condition that has unfair public shaming." It is WAY bigger and WAY more serious than this and I hope the editors here realize that one day even before the doctors so they can raise the right awareness for the disease. 

Just search Google for hsv vaccine. The article is in USA News. This is something that will take years to materialize but it's a positive step definitely. 

 

Regards 

[TreeHugger44]

Original poster here- just had Igg levels checked again and they were 0.23 for HSV 1 and 0.11 for HSV 2. To me this proves I do in fact have Herpes as I for sure had cold sores as a younger adult and this isn’t even showing that so therefore is clearly wrong. 

Anyway, just super frustrated as I was up all night itching and woke up with a sore inside my mouth (new spot for me! Good times). 

I really do think some people have something wrong with their immune system. What can I do?? In response to the above I have been checked for strep (above and below), I do sleep plenty, I have been avoiding nuts and excessive chocolate, switched from coffee to tea but drink an occasional cup. I take Vit C, Vit D, B vitamins, and now switched From Valtrex daily to Acyclovir twice a day, 400mg. Basically my body cannot fight it. 

The funny thing is I am otherwise healthy and don’t get sick often even though I work with sick children. 

[ash128083]

5 hours ago, benzgtx said:

It's unlikely that something is wrong with your immune system (by the way I thought exactly the same way and went to see an immunologist for it and all was disappointingly normal) it's just the nature of this viral infection that this forum deem as a "skin condition that has unfair public shaming." It is WAY bigger and WAY more serious than this and I hope the editors here realize that one day even before the doctors so they can raise the right awareness for the disease. 

Just search Google for hsv vaccine. The article is in USA News. This is something that will take years to materialize but it's a positive step definitely. 

 

Regards 

I agree this is DEFINITELY more than “just a skin condition” and I wish doctors would take it more seriously and really try to find something to help us with this. The reason I think I have something wrong with my immune system is because I am sick constantly, at least every other month I am at the doctors. If I don’t get on antibiotics I end up in the ER because of my asthma that has gotten so severe in the passed several years. I just don’t understand how out of nowhere this started happening. So frustrating. I’ve been trying to find clinical trials somewhere because I’m desperate.  

[ash128083]

1 minute ago, ash128083 said:

3 hours ago, TreeHugger44 said:

Original poster here- just had Igg levels checked again and they were 0.23 for HSV 1 and 0.11 for HSV 2. To me this proves I do in fact have Herpes as I for sure had cold sores as a younger adult and this isn’t even showing that so therefore is clearly wrong. 

Anyway, just super frustrated as I was up all night itching and woke up with a sore inside my mouth (new spot for me! Good times). 

I really do think some people have something wrong with their immune system. What can I do?? In response to the above I have been checked for strep (above and below), I do sleep plenty, I have been avoiding nuts and excessive chocolate, switched from coffee to tea but drink an occasional cup. I take Vit C, Vit D, B vitamins, and now switched From Valtrex daily to Acyclovir twice a day, 400mg. Basically my body cannot fight it. 

The funny thing is I am otherwise healthy and don’t get sick often even though I work with sick children. 

Are you having just oral outbreaks or genital outbreaks as well? I would give anything to have this on my mouth instead of down below. Valacyclovir worked for me for 8 months and being sick has set me back I think. I get sick a LOT, which makes me think I have an immune problem, but, I’ve always been sick a lot so I don’t know why all of a sudden I can’t fight us. You are around the same age as me, I’m 34 and I started to wonder if I was going through perimenopause even though I’m young for that because I read the herpes virus can become a pain during menopause because of your hormones. I made an appointment today to get swabbed and see if I am resistant to the antivirals. I’m also going to ask for a referral to an infectious disease specialist because I cannot take it anymore.

[Clarity]

I can relate to all of you! I’m 37 and after 6 years mine is 100% worse for the Past year. It’s terrible. It’s ruling my life. I do my best to cope. On another support group I explained this and the moderator said that our immune system changes every 7 years. Not sure if this is true but I guess it would make sense. I believe the virus may be evolving too. Just like the flu. Everyone is very familiar with how the flu changes each year. Maybe taking the anti vitals for too long isn’t a good thing because it Won’t work when you need it. What I do is constantly work on eliminating every potential stress from my life. This doesn’t seem realistic but living like this isn’t either. I had to quit my high stress job, I eat mostly organic, I do not eat at restaurants, I do a lot of self care, I use natural makeups, deodorants, candles, soaps. I journal everything to bring attention to what else I can do. It’s a constant search for what else I can do. I am on the verge of breaking up with my 11 year relationship (in which I didn’t give HSV to them) because it Causes me a lot of stress. This might sound a little woo woo but all of a sudden I am seeing a lot of posts about it getting worse, could it be the universe? Could it be something happening that we dont quite understand? I have been able to line my periods up with the moon, which is how it used to be. So if big shifts are happening, would that not affect us? I don’t know. I am grateful for the relationship that herpes has given me with my body. I have never been so in tune with myself. But these constant outbreaks are hard and I pray for relief for all. This is a serious condition. We need help. And we are definitely not getting the attention needed for this disease. 

[ash128083]

I’v definitely noticed an overall change in my health the passed few years. I het sick a lot more, my asthma is worse, and this virus has spiraled out of control for no reason I can think of. This time in my life I have not been stressed, I eat well, sleep well, exercises, take vitamins, lysine, supplements that are supposed to aid in herpes. I am scared to go off the antivirals because I feel like I would get more outbreaks and want to keep the shedding low and protect my husband as much as possible. At this point I’ve thought of leaving him as well because I never want to be intimate and am so depressed over this. I went just to the doctors because I thought all the antibiotics and 3 day prednisone I was just on started a yeast infection but my tests came back normal, and normal for bacteria. When the nurse examined me she didn't notice any lesions except MAYBE one area above my clitoris looked like one could be emerging, yet my whole vagina had been itchy, red and on fire. I assume its an outbreak from the prednisone and being sick. I was finally able to get a prescription for name brand Valtrex to try. A friend of mine only absorbs name brand medications so I figured I try it. I also asked for the acyclovir ointment to try down there. I’m desperate. I’ve been doing 2g of valacyclovir a day to try and speed up the healing and I do get relief from it when I take it so idk if I have resistance or not. All I know is when I was first diagnosed and got a typical sore every so often it was way less intense than this! I’m at a loss and trying to get an appointment with an infectious disease doctor. It gets to a point where it hurts to walk and wear pants, and all I want to do is sleep. It’s taking a toll on my life as a wife and mother. I have been researching a new drug called previtilir or something like that, it is in stage 2 clinical trials. I pray that it passes through to stage 3 and will be able help us. The suffering with this is immense. I just want a better quality of life!

[Clarity]

Me too sister. Me too. For all of us. Did they give an estimated time that they will produce the new medication? I heard of these vaginal suppositories you can make and I love them. You form them out of coconut oil once you mix it with a bit of tea tree oil. I’d look it up so you balance it right. But I keep mine in the fridge. When I need it, I put a towel down and pop that baby in there then lay in bed for 20 minutes or so. It feels good and makes wiping easier and less painful for the rest of the day. 

[ash128083]

I’ve read the trials should be done by May 2020 so 🤞🏼🤞🏼 

[ash128083]

I HATE how doctors aren’t taking us seriously. I just had my bacterial and yeast test come back normal. I emailed my provider and asked for the topical acyclovir ointment to see if that will help speed up healing and the response I got was “yes everything was normal, I think the steroids you were on set the outbreak off. Keep on the same regimen and we will talk soon!” Are you fucking kidding me?! I am having issues with this far too much, something is WRONG. Why won’t they call in what I ask. I wish somehow EVERYONE with disease could get together and cause a revolution, bang down the doctors doors. We need to be heard and taken care of. If I had cancer I’m sure they’d try to help.

[Clarity]

Yes!!! I would totally revolt with you. Let’s do it! 

[Stunnedbythis]

On 9/6/2019 at 3:04 PM, TreeHugger44 said:

Hi everyone. 35 year old Female and I have GHSV as diagnosed by my doctor even though all my IgG tests are always negative. We are both convinced it is herpes as is another doctor but my lesions don’t have a lot of fluid to swab and I am scared to go off antivirals at this time to test accurately. 

Anyway, I kept thinking it would get better and it doesn’t. I am having an outbreak so painful now I want to scream. I have been taking Valtrex 1gm daily for 5 months with zero relief and sometimes I take 2 1gm pills a day during an OB. I do think it has helped decrease the severity of outbreaks (bumps are smaller and less blister like but still lots of then all over my bump and sometimes thighs or public hair line) but not frequency. 

Anyway, is it normal to have outbreaks basically every week?? Like I had one early August which I thought was finishing up only to get worse Aug 12. That cleared up and led to another one Aug 24, and now Sept 6 I having a horrendous one. What do I do?? Try switching to a different med? Is my herpes resistant?? I am a single mom so how will I ever date again?? It feels like disclosure is a non issue when you don’t even have 2 symptom free and or bump free days to have intimacy. That would scare someone off for sure. To top things off I get tons of itching and burning in my nostrils and chin too and a sore throat to boot. Like I can’t live like this, it’s intolerable. 

Anyway just looking for suggestions and support, thank you so much!!

Very similar here...

[TreeHugger44]

Stunnedbythis, have you tested positive for HSV and have similar?  Or also test negative?

I am happy to report that I have less frequent bumps on my butt now but everything else is still awful, especially the facial/nostril/butt/vagina itching. It's every single day.  Which also seems like not herpes, isn't it supposed to be cyclical?  Can you have outbreaks if you never DON"T have an outbreak?

[ellemmell (previously effe]

@Clarity I’m worried about it happening to me too. I’ve had it for 14 years and now at 31 I feel like it’s becoming worse. 
 

I eat mostly organic, I don’t eat at restaurants, I quit coffee, drink lots of water, drink only specially filtered water, now taking Lysine, I don’t want to go back on antivirals because I feel like they are not good for me and can make it so they won’t work when I need them. 
 

im worried it’s going to get worse for me. I just had two OBs in a row and now I’m worried it’s going to just never go away or keep happening over and over. I’m in pain and so uncomfortable, shame and guilt and I’ve tried to be healthy, limit stress, I moved outside of the city, etc. Still got the worst OBs ever. Maybe I am doomed forever and nothing I can do now. 

[Flowerteacher55]

@ellemmell (previously effe

It's wonderful that you take such good care of yourself. You deserve to be happy and healthy. 

When something changes, such as suddenly getting two outbreaks, of course it starts a worry train that spirals. Worrying is like a rocking chair; it's something to do but you don't get anywhere! You may have experienced some type of change that triggered the outbreaks (maybe a new activity/amount of friction, new soap, maybe you caught a cold, etc). Have faith in your body. It is not the enemy! Your body is working so hard to take care of you. All our cells are constantly working to keep us well. Your body is for you, not against you.

You are not doomed, and this is not your fault. Something that may help is something called Tapping, which is an Emotional Freedom Technique. Basically it's a form of meditation where you unconditionally love and accept yourself, regardless of possible outcomes, because when we do this, fear of the future no longer has power over us. Here is a wonderful video with tapping dude Brad Yates:

And this site explains tapping: https://www.tapwithbrad.com/

You and your girlfriend can learn it together, too! It's a very healing and happy technique to have in your toolbox of stresse-reducers and as a tool to help make you happy and overcome guilt, shame, and fear. 

I hope this helps. Stay strong. You are a survivor and a warrior, nor a worrier! 

 

[Bloomer]

4 hours ago, ellemmell (previously effe said:

@Clarity I’m worried about it happening to me too. I’ve had it for 14 years and now at 31 I feel like it’s becoming worse. 
 

I eat mostly organic, I don’t eat at restaurants, I quit coffee, drink lots of water, drink only specially filtered water, now taking Lysine, I don’t want to go back on antivirals because I feel like they are not good for me and can make it so they won’t work when I need them. 
 

im worried it’s going to get worse for me. I just had two OBs in a row and now I’m worried it’s going to just never go away or keep happening over and over. I’m in pain and so uncomfortable, shame and guilt and I’ve tried to be healthy, limit stress, I moved outside of the city, etc. Still got the worst OBs ever. Maybe I am doomed forever and nothing I can do now. 

@ellemmell (previously effeI so sorry for your situation. I am in similar situation with atypical course of HSV infection. At least everyone say it is atypical but reading some of the topics here made me realize that more and more people have issues in treating this infection. 

Antivirals are not helping me either so for the last two years I started experimenting with natural antivirals like native propolis and St. John wort. (One warning, you can't take St. John wort if you taking nerve meds or antidepressants). This combination helped me in decreasing nerve pain which I have thanks to HSV infection and reduced severity of prodrome symptoms which I'm having constantly. For me is usually prodrome without outbreak.

Stay strong! Searching for relief and personal understanding of this infection can be sometimes life consuming. I hope you will find something that is helpful in a long run. 

All the best!

[Tiredmommaj]

I am 40 and have had GHSV for 10 years. I’ve had very frequent reoccurring BO from day one. I wanted to let my body do its job to fight it which was maybe a mistake. I started antivirals after a couple years but came off when I was pregnant with my 1st. During pregnancy and for 6 mo pp I found outbreaks were less. But came back with a vengeance. I went on again and stayed on throughout my 2nd pregnancy which I wish I didn’t for my little one. I have taken steadily since and for the last few years it’s getting far worse. It started in the genital area and now I have it everywhere. My chin which now I get bumps and tingling on my cheek, nose and eyebrow. My scalp is super itchy as well. Last year I decided to wax my low back for the 1st time and has a breakout following. It stayed itchy for what felt like was months. Now I have reg BOs there and they have moved up to mid back and recently shoulders. I feel it around my ribs, hips. I’m scratching everywhere all the time. It’s intense itching. I also had a BO on my inner thigh, my legs are constantly itching even on the lower leg and I feel like shaving has spread it all over as well. My most recent is on my thumb for past 2 weeks and I’m scared it’s more fingers. 
I’m  so depressed I have tried everything to be careful and it spreads anyway. I’m barely intimate which is causing relationship problems and has for a long time. I don’t want anyone touching me out of fear as it’s out of control on me how can I stop it to others. My work involves using my hands and now I have been forced to quit my job. I take Valcyclivir daily. I’ve tried homeopathy and lysine and essential oils. 
I consider how it would be safer for everyone if I wasn’t here. I love my kids and I can’t bare this anymore. I’m terrified. I’m lost. I can’t take much more. Just when I try to be strong it rips me down again. 
Thanks for listening and I wanted to share I’m in the same boat that it’s getting worse. 

[Flowerteacher55]

Hi, @Tiredmommaj,

I am so sorry you have been struggling. Please know and have faith that things will get better. There is hope, and we are all here to listen and support you. 

in regards to your outbreaks, it seems you could have an underlying immune issue, or perhaps you are taking a medication that lowers your immune system. Are you on any medications? 

Something that may help is getting a regular intravenous antiviral treatment. Some people need them to help their bodies get back to equilibrium. An immunologist could take a spinal tap and examine the fluids to see if there is any underlying condition impacting your outbreaks. Ask your OBGYN or doctor for a referral to an immunologist and/or virologist. You also could ask to see a dermatologist as well so they can evaluate the outbreaks in various parts of your body. A hormone test would also be of use to see if there is a hormonal cause to your outbreaks (for example, if this was the trigger, birth control could possibly help level your hormones).

You are worthy of getting the best medical support you can, and you may need to really push for this and advocate for it, since so many doctors don't write referrals for various reasons (insurance 🐂 💩). 

Your family would not be better off without you. You are a strong warrior and you can overcome these anxieties and struggles. Your body is not the enemy; it's trying it's best to fight this virus. It may just need a little support from IV antibiotics and some testing from immune specialists and virologist specialists. 

I am praying for you. Stay strong and be kind to yourself 🦋💛🍀 You are a blessing!!! 

grace