Constant breakouts, cant go on much longer

[Gemini 444]

I have had herpes for 20 years, i didn't notice any breakouts for the first 10 years or so but now for 7 years i have been experiencing a constant outbreak cycle, every 10 days. My visable symptoms are almost unnoticeable but i know its happening because of the leg pain behind my knee and the tingling and insect like sting i get during the first few days every cycle. I can't date or have sex, im very alone and feelings of depression are getting worse and worse, i have been thinking about ending my life more and more, i really try to concentrate on other things in life but my interest level in everything i once enjoyed has gone. I have very few friends as i also suffer with APD (avoidance personality disorder) seeking help is almost impossible for me, 2 doctors i have opened up to couldn't help. I dont want to be dead but i see no future where i can be content living like this. If there is anything else i can try to stop my outbreaks im willing to try anything no matter how extreme, does anyone know of anything else i can try? Neither antivirals worked for me, i dont drink, i eat well and are in pretty good shape, im 42 now and running out of time. 

[Seeker1960]

Hello @Gemini 444 I have had HSV for 6 years now and I can relate to your feelings. I am sure that you are a great person who has so much to offer in this world. Dont let HSV steal your hope and joy from you. I am sorry for what you are going through. This virus affect us all differently. Some hardly have any symptoms and other debilitating nevre pain. It infects our CNS and our immune system can keep it in check. When we get older our immune system gets weaker and this virus can take advantage of that. You're still young and have a lot to live for so don't give up. There are a lot of things being worked on eventhough they are still a few years out. You will still be young enough to take advantage of them. I don't have typical OB's, I get mostly nueropathy symptoms. I am a bit scared for my future as I am 62 and don't think a therapeutic solution will be here for me. So I just try to live life as full as I can. Find enjoyment where and when I can. Channel your enegy and refocus. Don't let this virus defeat you! Iam sure someone can help you find something to calm the outbreaks or stimulate you immune system. Hang in there! You will find someone to be with to support you.

[Bloomer]

Hello @Gemini 444! 

Unfortunately for some people it gets worse over time, not better. And I am reading more and more stories about antivirals not working. I am in same position, acyclovir does nothing for me.

Did you try alternative route? I had success with taking native propolis and St John wort. Lot of hsv positive people claim they had success with red reishi mushroom and lions mane. Maybe taking vitamin infusions? Ozone therapy? I know two persons who had great success with ozone therapy altough it is a bit pricey so it is not affordable for everyone. 

Did you check your thyroid? Vitamin D levels? This can also contribute to frequent outbreaks unfortunately.

I understand desperation. This infection can sometimes be life consuming. For me it was life altering. I really hope you will find something that helps. 

 

[Gemini 444]

Thanks Bloomer, I will look into those remedies. My brother did have thyroid problems, I suspect my vitimin D would have to be good as i work in full sun every day. 

 

[Seeker1960]

Thanks for the information @Bloomer Iam going to give the Lion's mane a try. Hopefully it can help with the neuropathy I have been dealing with.

[Bloomer]

@Gemini 444 check your thyroid if you can just to be sure. Thyroid issues can really mess everything in your body and can have influence on outbreak frequency. 

@Seeker1960 I forgot to add glutathione on list of alternative treatments for treating nerve pain but important thing is that it has to be taken through infusions. It's useless when taken orally. In Europe glutathione infusions are used for treating diabetic neuropathy or neuropathy related to chemotherapy. Lions mane is apparently potent antiviral so it is worth trying. 

[Seeker1960]

Hi @Bloomer I have started the Lion's mane yesterday. Thank you for the info on the glutathione. I see that there is a place that offers it not too far from where I live. Have you tried it? What has worked for you? 

[Seeker1960]

@Gemini 444 There may be a way for you to get the Pretlivir. It has beena approved as a Breakthrough treament for immunocompromised people. You might qualify for that if you have a Doctor who can state that and prescribe it to you. Also you can try LDN Low Dose Naltraxone. It is not very expensive at all.

[Gemini 444]

19 hours ago, Seeker1960 said:

@Gemini 444 There may be a way for you to get the Pretlivir. It has beena approved as a Breakthrough treament for immunocompromised people. You might qualify for that if you have a Doctor who can state that and prescribe it to you. Also you can try LDN Low Dose Naltraxone. It is not very expensive at all.

Thanks for more information, its the only thing keeping me going. I just need to find a doctor that cares now. 

[Seeker1960]

@Gemini 444 I am here to give you encouragement to keep hoping and coping. You can message me anytime. I believe there will be better days for you and for me. If our immune systems take a hit for some reason we can have more symptoms. I believe you will get back to the place you were before. It might take a little time. My symptoms flared up recently but I see some improvement as time goes by. Try new things to see if you immune system gets strengthened and can suppressive the HSV. Don't think about ending your life. You matter despite how you feel. I know you are loved by someone and it would a tremendous loss for you to leave. Hang In there and find a new reason for living. Don't let this virus have power over you! You're going to overcome!

[Gemini 444]

1 hour ago, Seeker1960 said:

@Gemini 444 I am here to give you encouragement to keep hoping and coping. You can message me anytime. I believe there will be better days for you and for me. If our immune systems take a hit for some reason we can have more symptoms. I believe you will get back to the place you were before. It might take a little time. My symptoms flared up recently but I see some improvement as time goes by. Try new things to see if you immune system gets strengthened and can suppressive the HSV. Don't think about ending your life. You matter despite how you feel. I know you are loved by someone and it would a tremendous loss for you to leave. Hang In there and find a new reason for living. Don't let this virus have power over you! You're going to overcome!

Im 95% sure its stress and my own head causing my constant outbreaks. I hate my life and cant accept myself like this. I wont do anything drastic while my parents are still here, i dont see them often and dont even really get along with them well but it would destroy my mothers life if i died. 

[Seeker1960]

,You care about people and they care about you. You may hate your life right now but you can change that. You can find purpose and meaning for your life. Yes you have HSV and so do many others. You can accept yourself with this virus and others can accept you and love you as well. You need to get to a better place spiritually, emotionally and physically. You came to this forum for a reason and for advice so that tells me you want to keep living.

You can have a full life even with the annoyance that HSV can be. Hang on and hang in. We need to be here for eachother 

 

[Grace78]

On 11/18/2022 at 6:16 PM, Gemini 444 said:

I have had herpes for 20 years, i didn't notice any breakouts for the first 10 years or so but now for 7 years i have been experiencing a constant outbreak cycle, every 10 days. My visable symptoms are almost unnoticeable but i know its happening because of the leg pain behind my knee and the tingling and insect like sting i get during the first few days every cycle. I can't date or have sex, im very alone and feelings of depression are getting worse and worse, i have been thinking about ending my life more and more, i really try to concentrate on other things in life but my interest level in everything i once enjoyed has gone. I have very few friends as i also suffer with APD (avoidance personality disorder) seeking help is almost impossible for me, 2 doctors i have opened up to couldn't help. I dont want to be dead but i see no future where i can be content living like this. If there is anything else i can try to stop my outbreaks im willing to try anything no matter how extreme, does anyone know of anything else i can try? Neither antivirals worked for me, i dont drink, i eat well and are in pretty good shape, im 42 now and running out of time. 

I’m in the same boat. Used the be almost outbreak free now I’m in a constant cycle. It is extremely depressing. I can’t even have normal intimacy with my husband for fear I will infect him. I don’t understand why it’s gotten so bad. All the gyns I’ve seen just prescribe antivirals that don’t work. After reading a bit on here I’m going to look into ozone therapy and this lions mane stuff. No idea where to get it but at least it’s something else to try. Just want you to know I get it and it really does suck. 

[LosingHope]

On 11/19/2022 at 11:56 PM, Seeker1960 said:

Hello @Gemini 444 I have had HSV for 6 years now and I can relate to your feelings. I am sure that you are a great person who has so much to offer in this world. Dont let HSV steal your hope and joy from you. I am sorry for what you are going through. This virus affect us all differently. Some hardly have any symptoms and other debilitating nevre pain. It infects our CNS and our immune system can keep it in check. When we get older our immune system gets weaker and this virus can take advantage of that. You're still young and have a lot to live for so don't give up. There are a lot of things being worked on eventhough they are still a few years out. You will still be young enough to take advantage of them. I don't have typical OB's, I get mostly nueropathy symptoms. I am a bit scared for my future as I am 62 and don't think a therapeutic solution will be here for me. So I just try to live life as full as I can. Find enjoyment where and when I can. Channel your enegy and refocus. Don't let this virus defeat you! Iam sure someone can help you find something to calm the outbreaks or stimulate you immune system. Hang in there! You will find someone to be with to support you.

You seem to know a lot. I need some help from the community, please. 

So, near the end of October, I had unprotected sex with the mother of my child-- we're not together--while she was over seeing the kids. Near the end of October going into the beginning of November, I started to experience several STD symptoms. It first started with flu like symptoms such as a warm sensation in my stomach, followed by nausea and feelings of malaise. Then it went away and a few weeks after, I began feeling intense itching near my scrotum, anus, rectum, and on my palms and penis. I also began experience intense pressure at the tip of my penis and shooting pains going through my urethra. Shortly after that, I began experiencing electric tingling pains shooting through my spine, neck, near my eye sockets, and in my eyes. My eyes themselves even crackle, tingle, and itched. I have even experienced crackling, tingling, and soreness in my throat. My lips, gums, and tongue even tingle and crackle, but I haven't seen any cold sores. My gums are even in pain like I have gingivitis, which also has never happened before.

I also experienced shooting pains going up and down my butt, thighs, groin, legs, and pain in my joints. To make matters worse, I also began experiencing sharp pains in my lower abdomen upper groin area. It even feels like it's attacking other organs like my kidney and liver. It even feels like something is stuck in there. And since then, I have been experiencing these symptoms off and on, with some days being worse than others. I have also experienced ringing in my ears, which I've come to find out through research is called tinnitus; a symptom associated with hsv2.

I confronted my baby mother about the symptoms and she threw a fit. However, I also began to notice she was exhibiting symptoms that seemed questionable. She continued to complain about headaches, she vomited constantly, was in the bathroom for long periods of time, and even complained that she was so dizzy that she had to sit on the bathroom floor for an hour at a time. She also complained about pain in her lower abdomen upper groin area. But what really set off a red flag is when she casually told me that she had experienced discharge from her anus as she was using the bathroom. She also claimed to hear voices, which struck me as odd, but I didn't think about it too much until my own ears started ringing constantly. And they've been ringing off and on since then.

Since then, I've gotten tested for UTI, yeast infection, syphilis, chlamydia, and HIV, all of which came back negative. The only thing I hadn't tested for was herpes and I just did that today.

I have been dealing with these symptoms for most of the month and although it seems to subside at times, it always feels present, never going away. However this whole time I haven't experienced lesions or sores like most people expect to see with herpes. For about a week I had constant night sweats and was excessively sweating during the day, which caused me to wipe my face a lot. As a result, I ended up with a huge hard bump on underneath the side of my lip. I don't really see a rash on my anus, my penis, or scrotum, but they still itch like crazy.

My face constantly feels hot and a flushed with mild irritation, but once again no sores, aside the large bump. The bump itself became big and red but now it's getting smaller and blacker. Even the doctors said that the bump is just an ingrown hair.

When I describe symptoms and bring up HSV2, many say that symptoms don't sound related, despite the fact that many of the symptoms seem to match up not only to what I found online, but to other symptoms posted by the community. I was on another herpes forum and two people said my symptoms didn't sound related to HSV2. In fact, many people have told me that I'm simply suffering from stress and anxiety. But I've been stressing anxious before and it never felt like this.

So basically in a nutshell, it seems like I'm experiencing neuropathic hsv2 symptoms, but I'm not breaking out into the lesions and sores. What does the community think? Many in this forum have had experience with this, so I need some help. Does this sound more like hsv2, or could it be stressing anxiety like the doctors and other people have been telling me?

[Seeker1960]

Hello @LosingHope I am not an expert on all things HSV but I know the truth of my reality and personal experience with it. Your symptoms if HSV related are not typical according to the "experts". So if you go on the HC site you will be told it's not Herpes and it's anxiety or something else. There are some questions that should be answered in your search for your answers. 1) Did you ever have oral cold sores? 2) Did your partner ever have oral cold sores growing up? 3) How long have you been sexually active with you partner and has it been monogamous? Obviously we are trying to see where the HSV entered into the picture. If you were negative which I suspect then when did your partner get it? If she is have new symptoms then she probably has a recent infection as well.

HSV infects the nervous system not just the skin. It can situate in different nerve areas or infect the Central Nervous System. If you are newly infected it will take a little time for your immune system to recognize and defend against the virus and build up antibodies. You may not test positive for a 8bor more weeks. It took me like 15 or 16 weeks to test positive and I had to get a Western Blot. Now that I have had it for a while I test positive on the standard tests.

If you have HSV you could have either type 1or type 2. You can either type genitally or orally. Everyone's body reacts this virus in different ways although it seems like many people get the typical blisters some are totally asymptomatic or have symptoms so mild they don't even know they have it. For others like me we have symptoms which started very much like yours. Mine calmed down after about a year and an half. They only have recently fired back up because of some seriously stressful situations in my life and also that my immune system took a hit getting the last covid vaccine. I feel it like my body rebooting and the symptoms are gradually receding. 

I would ask your partner a few more questions to see if she was with someone else recently. You both should get tested now and if you're negative then I would wait until February or March for the next test. I wasted a lot of money on tests that showed negative because my antibodies had not developed yet. You want to find the type of HSV that you have.

HSV2 and HSV1 can be equally nasty on our nervous system. HSV2 carries the stigma more as it's associated with genital Herpes and HSV1 is associated with oral "cold sores". They are essentially the same and HSV1 has become prevalent in genital infections.

I don't know what if any treatments you are trying. Antivirals help some people although I don't remember them helping me much. They might help you. The various form of neuralgia you are experiencing can be difficult to manage. People have tried various drugs for pain and other anti anxiety drugs to calm their symptoms. My belief is that your immune system can get it fairly under control after awhile. If you have immune system issues then you may need to go a different route. I am trying some natural antiviral like Lion's mane.

Basically, there is no one size fits all here. What works for some doesn't for others. The only thing that will work hasn't been fully developed and that is a vaccine or cure. There are things in the works but they could be 5 to 7 years before they are on the market.

Sorry, I wish I had better news for you. I know what your going through. Hang on and hang in. Things will get better over time but it will seem like a long-time. Keep learning about the virus and keep track of your symptoms. Most experts are going to say your crazy and put you on Xanax or something. Your not crazy and it's not all in you mind. Your symptoms could be HSV. You just have to be patient and wait to get the confirmation. 

I am here if you need support. 

[LosingHope]

1 hour ago, Seeker1960 said:

Hello @LosingHope I am not an expert on all things HSV but I know the truth of my reality and personal experience with it. Your symptoms if HSV related are not typical according to the "experts". So if you go on the HC site you will be told it's not Herpes and it's anxiety or something else. There are some questions that should be answered in your search for your answers. 1) Did you ever have oral cold sores? 2) Did your partner ever have oral cold sores growing up? 3) How long have you been sexually active with you partner and has it been monogamous? Obviously we are trying to see where the HSV entered into the picture. If you were negative which I suspect then when did your partner get it? If she is have new symptoms then she probably has a recent infection as well.

HSV infects the nervous system not just the skin. It can situate in different nerve areas or infect the Central Nervous System. If you are newly infected it will take a little time for your immune system to recognize and defend against the virus and build up antibodies. You may not test positive for a 8bor more weeks. It took me like 15 or 16 weeks to test positive and I had to get a Western Blot. Now that I have had it for a while I test positive on the standard tests.

If you have HSV you could have either type 1or type 2. You can either type genitally or orally. Everyone's body reacts this virus in different ways although it seems like many people get the typical blisters some are totally asymptomatic or have symptoms so mild they don't even know they have it. For others like me we have symptoms which started very much like yours. Mine calmed down after about a year and an half. They only have recently fired back up because of some seriously stressful situations in my life and also that my immune system took a hit getting the last covid vaccine. I feel it like my body rebooting and the symptoms are gradually receding. 

I would ask your partner a few more questions to see if she was with someone else recently. You both should get tested now and if you're negative then I would wait until February or March for the next test. I wasted a lot of money on tests that showed negative because my antibodies had not developed yet. You want to find the type of HSV that you have.

HSV2 and HSV1 can be equally nasty on our nervous system. HSV2 carries the stigma more as it's associated with genital Herpes and HSV1 is associated with oral "cold sores". They are essentially the same and HSV1 has become prevalent in genital infections.

I don't know what if any treatments you are trying. Antivirals help some people although I don't remember them helping me much. They might help you. The various form of neuralgia you are experiencing can be difficult to manage. People have tried various drugs for pain and other anti anxiety drugs to calm their symptoms. My belief is that your immune system can get it fairly under control after awhile. If you have immune system issues then you may need to go a different route. I am trying some natural antiviral like Lion's mane.

Basically, there is no one size fits all here. What works for some doesn't for others. The only thing that will work hasn't been fully developed and that is a vaccine or cure. There are things in the works but they could be 5 to 7 years before they are on the market.

Sorry, I wish I had better news for you. I know what your going through. Hang on and hang in. Things will get better over time but it will seem like a long-time. Keep learning about the virus and keep track of your symptoms. Most experts are going to say your crazy and put you on Xanax or something. Your not crazy and it's not all in you mind. Your symptoms could be HSV. You just have to be patient and wait to get the confirmation. 

I am here if you need support. 

Thank you for the help and support. The mother and I weren't together and hadn't done anything in years. I hadn't had sex with anyone in over two years and had never tested positive for HSV or exhibited these symptoms. She claimed she hadn't been done anything in a while but I suspect she wasn't being truthful. When I confronted her about it after I started experiencing symptoms. She claims she got a Pap smear and got tested and everything came back negative but I also believe she's not being truthful about that. But after reading your posts and seeing how similar the symptoms were, I'm pretty sure that I have HSV2. In addition, my immune system may be compromised because I have an esophagus issue, so you may right about having immune system issues. That may be making the symptoms as bad as they are.

I actually have an endoscopy tomorrow and have a pretty good feeling they're going to see the damage from the HSV2, since it feel like it's also tearing up my stomach. 

I'm not going to lie...after reading all the posts...I don't think I can do this. I can't live like this. I'm trying not to do something crazy like harm myself, but it's getting really hard. And when I hear about the antivirals not working, I honestly don't have much hope. Most of the posts I read discuss struggling for years with persistent OBs and worsening symptoms. My side and stomach have been killing me off and on for days, I can't imagine going through it for years. I don't want to give up but I am already under extreme stress, easily depressed, and in a bad place in life. And although I understand that it can be managed, there's a LOT more unfortunate stories out there with less positive results. I'm trying not to stress, so I don't make it worse but it messes with me even when I'm calm. Sorry, just venting a bit. 

I saw what you said about Lion's Mane in earlier posts. I may try that, but I'm afraid that my body might take too to it. To the rest of the community, what other natural supplements do you recommend? Is Sea Moss an option?

 

[Seeker1960]

@LosingHope You're newly infected and your body is learning to react to it. In the beginning it was like that for me as well. Treat your depression and other symptoms as they all are probably not HSV related. Don't let HSV be an excuse to end your life. It adds an un wanted dynamic to your situation buy it isn't worthy to respond by giving up on life. I say get your depression and anxiety under control. Try different things to support your immune system. Try the antivirals as they might work. 

I am not so sure that the HSV is causing the damage that you're talking about. It could make it feel worse but not the cause I don't think. You probably have GERD as stress causes concentrated stomach acid.

Unfortunately HSV is with us for life but life can still be great with HSV. I'm doing very well with it. I find enjoyment in my work and my family and enjoying life. Yes it sucks that I have it but I am not letting this virus destroy me. I am still hoping that a break through medicine or treatment come out. Things seem to be moving faster and in the right direction over the last couple of years. So help could be around the corner.  You're still young enough to benefit and you might see a total cure. Don't give up on hope@ Don't give up on life. Don't give up. Give it some time. I can't promise that you will be symptom free but it should follow the couse and get better and calm down to a point it's not the daily issue in your life.

Hang in there!

[LosingHope]

Thank you for the encouragement. I took a HSV2 test yesterday and the results came back negative, but after reading all of the posts, I know not to fully trust the initial test. I actually have an endoscopy today to figure out what's wrong with my esophagus. Is there any way to treat the Urethritis caused by HSV2? I keep getting pains in my urethra and it's getting really uncomfortable.  The symptoms are dying down some, but still present, and got a little worse last night. 

[LosingHope]

So an update: Got the test back for the endoscopy, which found mild gastritis. They going to do a biopsy to see if it's an infection. Speaking of that, HSV can also cause gastritis and uretheritis, right? 

Moving on...

So, felt the electric crackle in a few places today, but nothing serious. Got home about 5:30 and was fine for a bit. Ate a Subway Sandwich and then ate some cookies. It's now 8 and I'm starting to feel the crackle. The lymph node under my right jaw is also starting to get tender. Pains going through my sides, some just electric and others are throbbing and painful. Soreness on the inside of my bottom lip. Had a few little crackles and a little itching down there, but that has subsided. Off and on feeling weird pressure at the top of my head. Bump underneath the lip is still hard, but it at least feels like it getting smaller. No breakage or fluid. But my fingers itched and crackled with a weird numbness. And now they feel really cool underneath the skin. I assume that may be due to anesthesia from the endoscopy. Regardless, it feels like I can still feel the HSV roaming around my body. Eyes are feel like they're swelling, pulsing and itching here and there but not as serious. My feet still crackle and itch every now and then. And I still feel itchy near my neck, shoulders, and collarbone at times like I'm wearing a furry sweater (I'm not).

I'm not sure but the OB may be trying to die down. I've been taking Elderberry for the past two days and it helped in the daytime, but at night, I started feeling the symptoms again. Still not as bad, but bad enough. Been checking periodically for changes. I still don't feel any sores where the tingling is the worse and I can still sit comfortably so I don't think I have any of the "painful sores" that make it difficult to sit or lay down, which is good. However, the top of fingers have been periodically itching all day and still feel pressure and pain inside my urethra every now and then. Can someone tell me: is this what it's like when your OB is starting to end?

[Seeker1960]

On 12/27/2022 at 5:08 PM, Grace78 said:

I’m in the same boat. Used the be almost outbreak free now I’m in a constant cycle. It is extremely depressing. I can’t even have normal intimacy with my husband for fear I will infect him. I don’t understand why it’s gotten so bad. All the gyns I’ve seen just prescribe antivirals that don’t work. After reading a bit on here I’m going to look into ozone therapy and this lions mane stuff. No idea where to get it but at least it’s something else to try. Just want you to know I get it and it really does suck. 

Hi @Grace78 I was reading something about Ginseng Rg3 and how it increases the effectiveness of Valaclylovir and it seems to have properties that inhibit the HSV from replicating. I am going to start using it tomorrow.

[Grace78]

@Seeker1960 I’m willing to try anything. I’m taking 1000 mg valcyclovir a day and still have constant prodrone and outbreaks. It never goes away and Im losing hope. Im taking all the supplements mentioned above also. HSV is manageable when it’s a few ob’s a year. A never ending outbreak is not a way to live. 😢

[Seeker1960]

I just started the Panax Ginseng extract tonight. Tastes horrible but I will find a way to mix it with some honey and water or tea. I read some encouraging things about its ability to suppress the virus.

Your change in outbreak frequency could be related to some changes in your hormones. Maybe you can look into that area as well. I am sorry about your situation. I am sure you will get it back under control. You might have to switch antivirals. Pretlivir should be coming in the near future so that should help. Don't let this virus wear you down. Stay positive. Stress also is a trigger so look at managing that as well.

Try the Ginseng extract and the Lion's mane maybe the Red Reishi mushroom too. Stay away from steroids as they weaken the immune system. 

Good luck, keep us posted. I'll be praying for you.

[Grace78]

@Seeker1960where did you get the ginsing extract? Is it a powder? Let me know if you see a difference. You may be right about my hormones. My gyn tested me but said I wasn’t pre menopausal yet. But I seriously think that could be the issue. I may look into further testing. I appreciate the prayers and your support here. It’s easy to feel alone in all this. 

[Seeker1960]

@Grace78 I found it on Amazon. Look for Pocheon Korean Red Ginseng Extract. Get the Gold not the Royal as the Gold is more potent. It's not cheap but worth it if bit helps. 

It is a syrup with a consistency of molasses  and I take it with some warm water with a little honey to cut the taste. Anything that tastes like that has to work 😆 

Keep your spirits up and stay hopeful. I know it's not easy at times. I struggle myself but then I remind myself that it could be worse and that life is still meaningful and worth living.

I'll let you know if the Red Ginseng is helping. Let me know if it works for you. I feel it will.

[Grace78]

@Seeker1960holy cow that stuff is expensive! Let me know how you do.