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Hey @mr_hopp, I appreciate the platform that you have created here. It has been a place to find support, encouragement and learn how to cope with HSV but also thrive with HSV. Since joining the HSV community I have been searching for answers and support. I also have tried to offer others the same. I believe that some good news on the treatment and cure front is getting closer. It seems like there are so many different things being worked on. I just hope that I will be able to take advantage of them. I came across SADBE on another site and did some hunting and found out more info on it. I've tried different homeopathic treatments that may have helped in someway but I definitely believe that getting the immune system trained to react to HSV is something that can work. It can have varied results and not everyone responds the same but I definitely think that it is worth a shot. You have to do your homework as it is not as simple as taking a tablet or a shot. You have to apply it with care and proper dosage at the recommended intervals. After that you have to be patient and see if you get the desired response. I don't know what the long term outcome for me will be but having some measure of relief has been a blessing. I will keep everyone updated on my experiences. Thanks again for your support.
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Hello my fellow HSV warriors, I just wanted to share my experience using SADBE 2% which is Squaric Acid 2%. I came across this on another site and look into it. It has been general prescribed to treat genital warts. It act as an immunotherapy by triggering your immune system the produces certain antigens that have the effect of suppressing the HSV from reactivation. I just applied my second application and so far I have had a had very good results. I do not get typical outbreaks but I get nueropathy. I was dealing with burning, itching, nerve pain in my legs and genital area that was very annoying on a near daily bases. Just before I started SADBE I had a hit to my immune system after I took the Covid Booster. I was worried that I would be debilitated by the neuropathic issues as it flared up worse than before. My issues were getting a little better just before I started. So it's been about 100 days since my first dose and my nueropathy is pretty much non-existant. I used have daily reminders of my HSV infection and now It hardly crosses my mind. I definitely believe that the SADBE is training my immune system to respond to the HSV more effectively and keep it from reactivation. I believe if Pretlivir or IM250 get approved that in combination with SADBE 2% it could be close to a functional cure. SADBE is not a cure or a miracle drug. It is an immunotherapy that can take time to work depending on your immune system response. Some people report very good results other marginal and others don't notice much effect. I still think it is worth giving it a shot especially if you're like me trying to deal with neuropathic pain. SADBE 2% can be prescribed in the US at a compounding pharmacy. I chose to mix my own which might be your only option if you live outside the US. If you are interested you can look up the Sadbe sub-reddit. On Reddit for complete information. This is a relatively safe topical treatment but requires care in its handling and application. Some people have been using this for 6 years without issues. Good luck to anyone goes down this route and I hope you find relief and reduced outbreaks.
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It depends on what you define "cure" as? There will probably be something like a functional cure out within 5 years. A sterilizing cure will probably take longer. The good news is there is some progress and many people are working on various approaches. Have you looked into SADBE? If not you can check it out on reddit r/sadbe. It is a form of immunotherapy. Not a cure but has the possibility of training your immune system to naturally suppress the virus from reactivation.
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I messed up (looking for advice)
Seeker1960 replied to CatLady3000's topic in The herpes talk: disclosing
Well not a good situation. You need to have that talk as difficult as that might be. Just be armed with the information. It is unlikely that HSV was transmitted. Find out if he has had oral cold sores after all he could have given you HSV1. Decide if you are going to continue and come up with the best plan to minimize the risks. If he really has feelings for you he may make the decision to continue once he knows the facts. Good luck. -
Initial Outbreak for 2 Months? GOING CRAZY! HELP
Seeker1960 replied to char68's topic in Herpes question(s)
Hey @char68 I tested at like 4, 6, 8, and like almost 12 weeks and was negative. I tested positive on the Western Blot at like 16 weeks. I tested positive on the igg after that. I think Valtrex can delay the development of antibodies and therefore can affect the tests. My initial symptoms lasted like a year and a half with gradual improvement I guess as my immune system rallied back. -
@ShugAvery This virus can affect us emotionally, mentally and physically. Unfortunately, this virus affects us all differently according to how our immune system responds. Some are asymptomatic and don't even know they are infected and passing this on while others can have frequent outbreaks. I believe women have it worse because of hormone changes and menstrual cycles. As far as sexual rejection, I can't really say anything on that as I'm married and I was not on the dating scene while I had HSV. I have HSV1 and so does my wife. I know it is tough to disclose to someone that you are feeling some chemistry with only to be rejected. You are still the same beautiful intelligent and interesting person that you were before this. You will find someone who has oral HSV1 and they will understand the risk they have of infecting you and vice versa. They will make the informed choice to be with you and it will be a non-issue for you both. Be patient and don't give up. There are more effective treatments on the horizon that will greatly limit HSV's grass on our lives. If you go to reddit look up r/sadbe it could be something you might want to try. Good luck and hang in there.
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Hi @Tiredmommaj There is no way and no scenario that your kids lives would be better without you in it period HSV withstanding. HSV is super common, my two daughters have oral HSV and so does my wife and it has only been a minor inconvenience for them. Now I can't say the same for myself because I have GHSV1 and I had it for 7 years now. It's no fun but I do try an live my best life as should you. If you a relatively young there are many different treatments and vaccines in the pipeline and something life changing could be coming in the near future. Wouldn't that be a shame that you weren't here to take advantage of something that make HSV a non-issue? Don't give up and stay strong and love your kids. They need you!
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Initial Outbreak for 2 Months? GOING CRAZY! HELP
Seeker1960 replied to char68's topic in Herpes question(s)
HSV affects everyone differently according to how their immune system responds to it. Some have similar typical outbreaks then some others get a variety of atypical symptoms. Mine started with and itch and progessed into all kinds of stuff from intense burning, electrical shock feelings, night sweats, autonomic dysfunction and so on. It died down after a long while and it has only now come back to bother me with nueropathy. So, what I'm saying is be patient and stay calm. You can try antivirals but they didn't help me plus if you take antivirals it could delay your blood test from being accurate. -
Vaccines are for prevention of infection but they are working on therapeutic vaccines as well. That would reduce viral replication and keep you from having symptoms. Maybe not a total cure but way more effective than what we have available right now.
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The good news is there are many different vaccines and new antivirals being developed. Bad news is there is nothing coming for 5 or so years. Takes time to go through phase 1,2 & 3 trials and studies. HSV is a difficult virus to tackle because of how is resides in the nervous system. IM 250 & Pretlivir , X-VAX, RVX 201 and UB621 are a few that are being worked on so something should hit the market within 10 years. There have been some let downs before but I think with the new mRNA science it could be a game changer.
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@LosingHope Don't lose hope. Hope is everything! It is what keeps us moving forward and keeps us from giving up. This is a just an annoying virus. Don't let it have any power in your life. You can still be the person that you are and even a better version of youself if you chose to be. Be a Victor not a victim!
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Hey @tweetsoc I am so sorry that you are experiencing this. It like you're in a limbo without confirmation. I still would say that you most likely have GHSV1. It is not impossible to have it in both places. So you will only test positive for HSV1. This virus is not predictable in its behavior or how it manifests itself. If you listen to some "experts" they try to say that H acts in a certain way but for many it doesn't. There are like 80 different strains of HSV1 some a more nuero-invasive than others. These mutated virus strains can cause our type of symptoms of nueropathy. Lately, my symptoms have died down in intensity but I still feel the tingling, irritated feeling in my ano-genito area. I am happy that it is not as intense as before and I can still manage and go to work. It should die down on it's own. Keep taking supplements that support your immune system. It will help your body mount a better response to the virus. Keep your stress levels down and take care of your general health. Hopefully, we will get some type of new and more effective treatment in the next few years. I'm hoping in the next 3 to 5 we get something but in the mean time Keep fighting and coping and managing this virus. Keep living you best life.
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The HSV virus resides in the Sacral Ganglia. So because of that and depending on your individual immune response it can pop up anywhere in that area. Your immune system tends to weaken as you get older so that could contribute to this as well. I'm not an expert but based on what I have read in other places.
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I've had urethritis and I had some trouble fully emptying my bladder. It was like a dribble sometime but not lately and not for sometime. I am 62 years old so the plumbing in general can act up a bit anyway.
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8 months... GHSV1 breakouts continuing
Seeker1960 replied to Sadbutokay's topic in Herpes question(s)
Thanks for your reply. My SO has OHSV1 but I still worry that she might get it genitally too. You hear so many so-called experts who say with conviction the HSV can't be this or be transmitted like that and everything else. Yet then there is reality that it does exactly the opposite to prove that the experts don't know everything about this and how it mutates. If they did they would have come up with a cure or better treatment by now. Thanks