Seeker1960

It started a few days after protected sex with a new partner. I also received unprotected oral. It started with an itch on my scrotum. No OB. Then I got night sweats and a electric like feeling through out my body. Felt like my inside nerves were vibrating. Then I developed a burning in my perineum which also included my scrotum. Felt like I was on fire. I also had urethritis. I also had CNS issues like gastroparesis for a while. I did everything you did. I Took a bunch tests, antibiotics so on. I contacted Hunter Hansfield, Terri Warren & Ana Wald. Terri Warren and Hunter Hansfield although they are respected in the field they don't acknowledge that HSV causes nueropathy. They stick to the idea that this is a skin disease and that it presents with the typical blistering lesions. They are wrong in that regard. I still have nueropathy and I finally test positive on the igg and West Blot for HSV1 only. It calmed down after about 2 years until recently. I got the last covid booster and flu shot. The hit on my immune system has triggered it and I have been back with daily nueropathy symptoms like burning butt and back and leg pain for the past month. It seems like it's calming down. I am taking the Lion's Mane that @Bloomer suggested. You tested positive foe HSV1 which could be oral but with your symptoms you probably have GHSV1 like I do. I think I have developed some other CNS issues affecting my sleep now. Bottom line is you need to keep your anxiety in check because it does make it worse. You can live with this just have to manage it. Not worth ending your life over. The good news is they are working on different things but are a still a few years out. Hang in there you're not crazy and the "experts" don't know everything about this. The new researchers are learning more and understanding how the virus is affecting the nervous system. Hang in there buddy. Keep living it should and will be better in time.

Hello @RudiK I know how you are feeling. The not knowing is so frustrating. You might or might not have HSV. Your partner is testing negative do they have any symptoms? You might just have some other urinary issue going on. The person I received HSV1 tested positive for HSV1 & HSV2 so I knew I was exposed before I tested positive. It took over 12 or 13 weeks before I tested positive on an igg test. I first tested positive via Western Blot. I also did not have the typical symptoms and still don't. I have neuropathy and related symptoms of burning, itching and other nervous system issues. Good luck in your search for answers but don't overly worry. You might not even have HSV.

I am so sorry for what you are experiencing right now. It wasn't fair of him to do that to you. He selfishly made the decision for you. You do need to have a talk with him and get at were his thinking was. He may have assumed since he has it so mild that it was not really anything. It could be ignorance that HSV2 can affect everyone differently. Some don't know they have it and others have chronic and painful symptoms. I think when you are emotionally settled you can have that conversation to see where things are going. If you love him and He you then love can overcome this. He needs your forgiveness but he needs to ask for it and not expect it. He can't just say "I'm sorry". Your life can still be everything you want it be with or without him if you chose. Stay strong and don't worry you will overcome this. Peace

Hey @MaddieLynn how are you holding up? I know there is a lot going physically amd emotionally right now. Try to get as much support as you can. Get some relationship counseling and decide what direction your relationship will go in. Hopefully, your husband is remorseful for what he has done to your marriage and family. Remembe It's not your fault. If you do forgive him hopefully you can rebuild on a better foundation and help each other deal with this virus. Hoping that you're feeling better. You will overcome this time in your life.

@Bloomer I agree with you 100% the medical establishment is very wrong about HSV. Probably why the pharmaceutical companies haven't really gone all out to find a cure or therapeutic. I believe the newer generation of researchers understand that HSV does affect the CNS in more ways and are looking at how to best attack the virus. The whole gene editing thing looks promising but questions remain about liver and organ damage. Until recently I have been managing pretty good. Now since that damn covid booster I having to address the pain and dysautonomic issues I experienced before. I have also been having sleep disturbances. My mom died in August and the additional stress was taking a toll on me. I had to use xanax to calm my nervous system down and get some rest. I am trying not use it and use it only as a last resort occasionally. I too am in a profession that I can't use that type of medication and do my job. My nerve pain thankfully is not constant but it kind of fires up and then when I am at home it calms down a lot. Although sometimes I do feel other symptoms just not the painful ones. I am hoping that my body will rally back and get things under control again. I am a little worried because it seemed like a long time the first time to get it under control. Hoping it's a shorter time this time around 🙏

I meant to say I couldn't eat solid food. I also neglected to mention brain fog as another symptom that I experienced.

When I first got HSV 6 years ago. I had some weird symptoms. Started with an itch then burning in my perineum and genitals, then I felt like my entire nervous system was vibrating or like I was plugged into some electrical outlet. Then I got the burn butt and back pain. Then I got gastroparesis like symptoms. I could really eat solid foods. I had to drink smoothies and shakes. I lost like 25lbs. I thought I was dying. I also developed orthstatic hypotension. So I thought I was developing an immune system disorder or MS or something. It was just the HSV reeking havoc on my CNS. It eventually calmed down after awhile even the nerve pain had subsided to the point I didn’t have many symptoms. Since getting the covid 4th booster the nueropathy has raised it's ugly head and been bothering me. Thankfully, it doesn't seem as bad right now and I am praying for it to go away. Thanks again.

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?

Hey @RingofFire I've had GHSV1 for 6 years now and it started with atypical symptoms.

Hi @RingofFire, the medical people you mentioned are supposed to be the top people in the study of HSV. Unfortunately, they don't know what others know including the people who are working on the latest vaccines and therapeutic treatments . HSV affects the nervous system and if it travels to the CNS you can experience nueropathy like I do. Burning butt, leg burning, itching and other stuff involving the nervous system. It calmed down but recently showed up after I took the last covid booster. So you're not crazy your symptoms are related to HSV. Do things to strengthen your immune system that could help.

Well stress affects the nervous system is some crazy ways so that could make sense. Reduce stress and calm your system down.

Hi @Nobita, I know this is taking you on an emotional rollercoaster but it is not as bad as you think. You can have children, you can get married and have a relationship. You cab enjoy your life pretty much like you did before. Millions of people have the virus and lot of people don't even know it. The good news is that they are working on vaccines and therapies that will help. If you are a young woman you will start to see something in few years as they are in clinical trials right now. Take care of you health because you want a strong immune system to keep the virus in check. Most people have HSV 1 orally so that theoretically reduces the chances of you spreading it to someone. Not saying it's impossible but saying it is less risk. Educate yourself and learn to live with this and have a good full and happy life.

Hi @willow9 I can relate to your feelings. I contracted GHSV1 about 6 years ago from someone who said they didn't know they had anything. Turnes she had both HSV1 & 2. I have since been tested several times even had two Western Blot test which are the most accurate test you can get and only have come back HSV1 positive. I have never had a typical outbreak but I have all kind of nueropathy type symptoms that came on initially and now have come back again since taking the last covid booster. My question is did you ever have oral cold sores or oral HSV1 and still get genital HSV1? Also I used a condom and still got it so condom or no you could still get it. I wish I would have known that before hand. You're going to be alright but it may make dating a challenge since you need to have the talk and let your future partners know. You don't want to do what was done to you. There are a lot of people on this forum who can give you a lot of advice and guidance to help you get through this. From now on use protection because having GHSV make you vulnerable to other STI's Good luck and stay strong. You're going get through this.

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.

Thank you @Jessica88. I think your explanation is plausible. I hope you are right about the "settle in" part. Let's see I'll let you know what happens down the road.

There may be some natural antiviral compounds out there. Herbalist or homeopathic medicine might be an alternative. Remember most of our medicines are derivatives of things found in nature.

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.

I took the 4th Moderna Booster on October 15th and my HSV symptoms are back after like 4 years. My mom passed away in August so we have similar stressor. Reading about your experience I the Booster has had an effect on the immune system and or triggered the virus.

Hello, I've had GHSV1 for 6 years. The first years I had a lot of different neuropathy and nervous system issues. They calmed down to the point I only had very slight symptoms of any. Just got the new Covid booster on 10/15 and I started getting the burning butt, back pain nerve pain in my legs. I am hoping that my immune system will bounce back and get this nueropathy calmed down. A little worried. Anybody else having issues after getting the last newest booster?

Sorry for what you've been through. Live is tough and you drew the short straw like the rest of us here. This virus affects us all differently and there are different strains of the virus. Some people live never knowing they are infected while others have frequent OB's. Everyone's immune system handles the virus differently as well. I do feel some progress is being made but it is slow just because of the nature of the virus. If a person takes a vaccine and doesn't have a OB for awhile and has one down the road how do you know if the vaccine works? It takes a long time to verify. Gene editing could hold promise but safety concerns about liver and organ damage are not clear. This virus doesn't cause a negative attitude but will make it worse. The best weapon is to stay as positive and hopeful as you can. Find enjoyment where you can. Develop yourself in all way that you can. That's the real answer. Be the marathon runner who competes without legs by using a wheel chair. Find yourself > be positive> have hope. Yeah life won't be the same like before but it still can be good.

Hi @RudiK You need to calm down as difficult that may be as anxiety makes this so much worse. So the question is could your symptoms by HSV related or not? The answer is that they may be related to HSV or not related to HSV at all. For me I had a variety of symptoms that were not typical and if it is HSV it will most likely take more than 12 weeks to show up on a igg test. I found out I was positive via a Western Blot after so many "experts" said I didn't have it. You will have to wait it out some more. I know you want answers but in this case there won't be any quick answers. I know your frustration and anxiety as I had the very same feelings. I ended up having GHSV1 and It's not the end of the World. If you have it you will learn to cope with it and live your life. Millions of people are living relatively normal lives with this and if you have it you will learn how to live with it also. It may be something life altering for some but not life ending or worth ending your life for. Keep your head up and keep working and doing your thing. You can still enjoy all the wonderful things in this world and have a full life. Hang in there my friend. Here is to hoping you don't have it and that you're not alone if you do.

Hello everyone, I have had GHSV1 for 6 years now. It seems like researchers are learning more about the virus and understanding the nuero-invasive behavior of the virus. It seems like a lot more companies are working on it so thats good. I guess they figure the first to market with a viable vaccine will hit the jackpot. It seems from what I've read that 5 years is the earliest a therapeutic vaccine could be available. There are also other types of suppressive therapies in clinical trials but they are still years away. Seems like the gene editing technology is a good approach but safety is the issue and how it may affect the liver and other organs. Trying to stay hopeful.