Seeker1960
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Posts posted by Seeker1960
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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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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.
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On 2/24/2023 at 5:43 AM, char68 said:
Thanks Seeker1960,
I think calmness is a luxury I will not having for a while. I still have 5 weeks to get to my 12. Even then it may be too soon. I was thinking of taking Valtrex to see if it helps but I wasn't sure if it would mess up my test. I'm glad you added that.
I'm really sorry to hear about your situation. How long were you getting all those symptoms? That's a lot to go through.
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.
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@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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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.
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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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On 2/5/2023 at 9:03 PM, tweetsoc said:
i have constant itching with redness in entire scrotum and penis that comes and goes. Some days the itching is so bad that I can't function.
The itching spreads to buttock and thigh.
Multiple doctors have ruled out fungal as the caused. Derma says it looks inflamed but isn't sure what it is.
All std including RPR and HSV 1 and 2 IGG and WB blot neg for type 2.
It's something as I never had this issue before.
What else could it be a new std?
The itching is all over including the groin, scrotum, thigh, buttock, penis....it comes and goes.
Anyone experience this?
No cream or lotion nor fungal powder helps. Fungal nyastin powder helps for about ten min then the itching comes back.
What can I do?
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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1 hour ago, Bloomer said:
@Seeker1960I forgot to ask you do you ever have symptoms of urethritis or trouble urinating?
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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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
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Hey it all depends on your immune system. There is no pattern, rhyme or reason to the way this affects us. You read that some people with GHSV1 have one OB and that's it. Then you read people have daily OB for months. Some people have mild symptoms and some have debilitating nueropathy. I don't get OB'S but I have different neuropathic symptoms that affect my nervous system.
This is not just a skin infection it is in our nervous system and depending on the the particular strain of virus we can each have similar symptom or totally different symptoms. Go figure?
He does your partner have OHSV1?
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@Bluenic Hello and welcome. I guess you've had it for 1 & 1/2 years? Did you get it from your current partner? This virus is not just a skin infection and everyone gets varying symptoms. It depends on the particular strain and your immune system's response. For women it can be triggered by hormonal changes and menstrual cycle.
It is frustrating that Doctors know so little about this. They don't know much beyond the standard responses and prescribing antivirals. There is not much beyond that in terms of treatment. Some find that going with natural homeopathic treatments help.
The feelings that you're experiencing can come and go. The duration and intensity also vary person to person. You are just going to have to try different things and see what works best for you. Stress can trigger these symptoms so managing stress is important. Some also say diet is important.
Sorry, I wish I had a better answer for you.
There are a lot of things being worked on like UB 621 and RVX 201 but probably won't be available until at least 2030.
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Well, it could be HSV1. You will have to wait long enough to develop antibodies to test on the Elisa test. Seems likely based on what you're saying.
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@Valencia Thank you for your response. I don't get ob's but mine is the form of neuropathy. I get burning, itching, pin prices and so on. I am hoping my SO is protected by her antibodies from getting the strain of HSV1 that I have. Your experience makes me feel that it would be unlikely that she would get it from me. Maybe not impossible but very unlikely. I have been wanting to hear from someone in your situation for a long time.
Thank you!
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@Valencia I answered you question on the other thread. What symptoms do you have? Did you get your GHSV1 from your husband or before? I am interest because me and my partner are reversed. I have it genitally and she has it orally. So I am interested on how protected she would be
Thanks
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Hi @Valencia You can get a Western Blot test for both HSV1 an HSV2. Just look up the University of Washington lab testing site. They send you the kit and you pay for the test and mailbox back over night. No insurance. It's more accurate that the igg tests that are current out here.
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Hi @LosingHope There are so many ways that this virus affects us individually it is hard to say what it triggers in us from day to day. It's tied into our nervous system so it could be related or not or it could be making a another existing issue worse. I am glad that you are getting some relief from what you are doing. I am feeling somewhat better myself but I know how deceptive that is. Today you might feel like you're almost normal and the next day this this raises it's ugly head and you are reminded that HSV is a part of your life forever or until a cure comes around.
I believe your night sweats will eventually stop once your autonomic nervous system gets functioning normally again. It take time for our body to adjust to the virus. There is no rushing the time frame regardless of what we are taking.
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It was pretty rough when I first was infected. I was a wreck. It started with an itch on my testicle and some redness which at first was hoping it was some yeast infection. It progressed to flu like feeling, night sweats for a few days, the electrical shock feeling and vibrating feeling. Then my balls feel like the were literally on fire for like weeksneuralgia.
Most of my symptoms calmed down after a couple of months except I had other symptoms develop later like prudendal neuralgia and some weird autonomic dysautonomia for awhile. Thank God those were not permanent and dissipated over time. I've only had a recent flare up of some nueropathy like burning butt feeling and some not too intense neralgia.
I guess you're thinking you might have H? At two months you may or may not test positive. You should wait a another month or so an get tested. Did you have an outbreak? I didn't have one either which confused me for a while. Then I came to the conclusion that I have an atypical manefestation of GHSV1.
Is the person you were with positive for HSV 1or 2?
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20 hours ago, nothappy said:
I've never had a out break and my IgG keeps coming back negative. My Dr. tells me I 'technically' dont have hsv and I should get counseling. I'm almost positive I have it but because i keep testing negative my family support doesnt believe me too. Im suffering from left leg nerve pain and lip pain that showed up right after sex. I dont want to hurt anyone. I dont want to do what was done to me. The person i was with refuse to talk. If i test negative and have no outbreaks am i infectious? You dont just go around telling dates you're hsv positve without proof. Seems the only way to know for sure is if it happens to your mate, and that is aweful. Help me with this please.
Hey @nothappy How long ago was the encounter that you believe you were infected. It takes a while for the antibodies to develop. I got a lot of nueropathy before I tested positive. So you could be infected and just not testing positive yet. So until you test negative like after 16 weeks or more I would err on the side of caution and presume that you are positive.
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Hey @AlliKat12 So prior to 2015 you tested negative for HSV1? I assume something happened that you wanted to test in 2015? Have you tested for HSV2 since 2022? I am asking how are you certain that you have GHSV1? I have HSV1 and in a relationship with my SO who has HSV1 orally since childhood. She is not the one that infected me and I worry about passing my strain to her gentially. She gets a cold sore on her mouth once in a blue. I've had it since 2016 and never had an OB but get nueropathy in different areas.
I worry about passing it to her either through intercourse or receptive oral. So I am very interested in your experience and anyone else's who are in a similar situation
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My experience with SADBE 2%
in General herpes discussion
Posted
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.