Seeker1960
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Posts posted by Seeker1960
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@Gemini 444 What type of HSV do you have 1 or 2? How long have you had it? What kind of symptoms do you have?
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If you read from some of the so called "experts" they say there are couples who have been together for like 20 years where they haven't passed it to their partners. Supposedly the longer you've had it you are less likely to pass it.
Then there is the knowledge of that the reality exist. That there is a possiblity and we don't want to gift someone we love with this. I am in a similar situation. I am afraid I will give this to my partner and although she already has oral HSV1 I am still afraid I might pass her my GHSV1. She doesn't really have symptoms very often but my symptoms are in the form of nueropathy. I just don't want to pass this to her even if she accepts the risks.
So I understand how you feel. At least you are taking as many precautions as you can so if it does happen you know you did what you could to prevent it.
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@Gemini 444There is a trial for Pritlivir signing up. This could work for you. It is a new antiviral drug in development. Here is the info to sign up.
As long as you have hope you can keep living and there is always hope. There is someone who can love and accept you out there. You also have to love and accept yourself. ❤️
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@Bloomer Thanks for the response. It would be interesting to see if anyone on this forum was infected with GHSV1 after having OHSV1. I've heard that previous uninfected could get it in both locations.
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The virus affects everyone differently and also depends on which type that you have. HSV1 is supposed to have less outbreaks after the initial compared to HSV2. As time goes by the immune system learns to recognize and naturally suppressive the virus. For some they don't have any or very mild symptoms for others they have frequent symptoms. Some people report what triggers there symptoms. Usually, something that weakens the immune system just enough for the virus to get the chance to reactivate.
Some have found good results in suppressive antiviral therapy. Some have gone the natural or homeopathic route. I am currently using Lion's Mane and Bee Propolis in an effort to strengthen the immune system and control my symptoms which are mostly in the form of nueropathy like burning, itching and other stuff.
Unfortunately, there is a lot of trial and error from person to person. What works for some doesn't work for others. You should try some different things and also look for possible triggers.
I'm sure others on the forum can add from their experiences of what might be helpful.
The other thing is that their are some things in the pipeline that are being worked on and could be available in a five or so years. It has taken way too long to get an effective therapeutic or cure but we have to remain hopeful that it will come.
Good luck in managing and coping with your OB's
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@Bloomer @Flowerteacher55 I was wondering about if you read of someone contracting GHSV1 after having a longstanding OHSV1 infection?
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.TThere is a large number of people that primarily have oral HSV1 which doesn't carry thw stigma of genital HSV2. Genital HSV1 infection rates are increasing and although it supposedly shed so much less and few outbreaks it still can affect people much more than just a skin condition. For me it has affected my nervous system and I have various neuropathic symptoms. There is some hope that there will be a vaccine or therapeutic by 2030 or hopefully a little sooner as there are some things being worked on but it has been a very slow process that has taken decades without any real solution. I most likely will be too old to benefit unless some miracle breakthrough comes about.
I would say give yourself and your friend some time. Love covers over a multitude of sin. So in this case this person may come to realize and be able to accept this situation and accept your explanation of how things happened. It may take a little time for it to happen so give him the space he needs to process things. Maybe he will reach out to you or maybe down the road a little you can reach out to him just to touch base and let him know that you still care and want his forgiveness. That you still want a future that includes him in your life. It's good to have hope but if after a while there is no softening of his heart then it will be time to move on without him and leave him be. Healthier for you to let go and move forward.
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It kind of happened to me except I am the one who got it from a female partner. She said she didn't know she had it and then tested positive for both HSV1 & 2. She said she never had symptoms. I unfortunately received GHSV1 from her and I have some pretty life altering symptoms. I wanted to believe here but somehow I didn't. I believe she has passed it on before and knew it or suspected it. I felt she down played my getting it and the impact it was going to have just because it wasn't affecting her life.
I chose not to stay in contact with her. I felt angry at here and myself for not getting her tested before. I felt betrayed that she didn't fully grasp the permanent impact on my life and health this was going to have. That she suspected and didn't give me a choice.
Those transmission facts don't mean much to someone who caught HSV. I only had intercourse twice and receptive oral a few times before I got it. I got HSV1 only eventhough she was positive for both and HSV1 is supposed to shed much less than HSV2. Yet here I am with HSV1 and lasting health issues.
I know you didn't intend to pass this on to your partner, but you can't fault him for feeling the way he does. Hopefully, he forgives you for forgetting to disclose but the fact that you were on suppressive therapy and the other stats do matter to him now.
Unfortunately, this may turn out to be a hard lesson or he may forgive you an decide to stay with you since you both have HSV. Trust will have to be re-established which may take some time. However, even after trust has been built back you may face some resentment from him everytime he has symptoms and is reminded of his life pre HSV and how he got it.
I wish you the best moving forward. The first person that you need forgive is yourself. You're human and not perfect. You can do better next time. Best wishes!
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While visually Herpes can be misdiagnosed they certainly look suspicious. Yet to be sure those bumps need to be swabbed as soon as possible and PCR tested. Then you can get a definite answer if it is HSV and what type 1 or 2. Don't take any antivirals until you get swabbed as it will interfere with the test.
Just understand whatever the outcome you will be able to deal with it and get through it. You are not alone and there is support out here. Feel better and stay strong.
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Hi @GH is not the end I know that getting the diagnosis that you have GHSV can be very unsettling. Glad the you contacted the Suicide hotline because you have a lot to live for. This virus is an inconvenience that can be manages.It is not a life ending illness. It will take a while for the antibodies to develop to the point that you can find out which type of HSV you have. It is most like HSV1. I received it also believing I was being careful. I'm not sure if I got it through oral or through intercourse.
Your life is not over just different. Get educated about what HSV is and what is isn't. For some the symptoms a few and far in between. Stress can trigger symptoms as well as anything that weakens the immune system.
You can still get married and have kids not to worry. Read on this forum of how many people got married or people who had kids after. Quite a number. Just be aware that you can pass this on to someone especially after a recent infection and that you need to take precautions not to do that. Learn more and you will be fine.
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@Bloomer I appreciate you sharing you experiences. I too believe that alternative medicine can help where conventional medicine fails. I am experiencing something new in my symptoms. I feel funny in my head and It comes and goes. Feels like a pressure with a mild headache at the top of my head. Pressure is behind the nose and makes my nose feel a little numb or tingle. Also having a light headed feeling. So I have another issue to look into. I am hoping it too will just die down on it's own.
I am taking the Lion's Mane daily but I am not 100% sure what effect that it is having. My nueropathy seems lessened a lot but not to the level of before. I am going to look at the native propolis and the St John's wort. I want to keep my immune system as strong as I can.
I was reading about XVAX and that the company applied for Investigational New Drug status. I don't know if they were approved but it made me wonder if that could accelerate it's development and human trials. It is supposed to be a different vaccine approach than the others.
The first company to market with a cure will be instantly a multi-billion dollar company.
Thank you for your positive an encouraging words. I wish you continuing success in managing of symptoms.
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@Flowerteacher55 Wow that reply was truly awesome! I felt encouraged just reading it. Your spirit is so positive.
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Hi @Acceptance10 Kudos to you for contacting your partners and concern for their health and wellbeing. Some people just selfishly don't say anything and that us how this thing just continues to spread. Hopefully for you get confirmation one way or the other. Most people have HSV1 from childhood. I didn't and got GHSV1 in my 50's. Sucks for me because for me it affects my nervous system and doesn't give me the typical out breaks. You have a good and positive attitude which important in making HSV a non-issue in your life. Hopefully your giver will get tested and take precautions from spreading it to someone else. Stay positive and know that you are a good person.
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3 hours ago, Bloomer said:
@Seeker1960 luckily I didn't experience gastroparesis but I had feeling of electric shocks through my whole body, had severe burning on my lips and mouth, pin and needles in my hands and legs, severe pain in my sacrum and severe weakness in my legs and then I developed symptoms which are consistent with pudendal neuralgia. I never had those symptoms before contracting HSV. At one point my neurologist thought I was having multiple sclerosis but that was ruled out.
I must say that my giver had mild course of HSV infection, unfortunately I wasn't that lucky and that's why is really important to disclose because we never know how HSV will impact others. Luckily most people who are HSV positive will have really mild symptoms and seldom outbreaks.
I had really hard time with HSV related neuropathy and it was really life altering experience for me which affected every aspect of my life. Even though it was really hard to live with that amount of nerve pain I managed to pursue career and I am still working. I think it's really important to stay active even though we are in pain. With time I learned what is helping me and how to reduce levels of pain so I managed to live life and be happy despite this shitty neuropathy.
@Bloomer My giver also swore that she didn't have any type of symptoms and didnt know she had HSV. I guess me contracting it later in life maybe allow it to penatrate deeper into my nervous system. You reminded me that I also had the pudendal nerve burning for a while. I thought it was isolated there at one time before I learned how this virus affects the whole body and nervous system.
What have you found that works or helps with this? I keep hoping for some therapeutic to be developed in time but it seems like there is nothing closer than 5 years away. I hope I have the strength and courage to endure the level of what you have endured and still find enjoyment in life. Trying to find ways to best manage this nueropathy.
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@Bloomer One other thing I experienced was some dysautonomia in the early part of my infection. I had gastroparesis ( lost a lot of weight had to drink a lot of smoothiesand milk shakes), I wouldn't sweat, I had positional hypotension but these went back to normal after awhile. Not sure if is happening again. Having sleep disturbances from possible Central Sleep Apnea. Getting that evaluated soon.
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@Bloomer I have been getting a funny feeling in my head from time to time. Like a pressure at the top of my head and also like behind my nose. Make my nose feel tingling and slightly numb. Just something that has come about with the re-emergence of these different neuropathic symptoms.
@Bloomer How has your HSV nueropathy affected your ability to work and function? I want to stay working for like 4 more years if possible and I worry that this will affect that plan especially the way I have been feeling lately.
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Hi @nothappy sorry for what your going through. Unfortunately there isn't easy answer to your question. Your symptoms could be HSV related. Not everyone gets the typical outbreak and blisters. I got mostly atypical symptoms like nueropathy in the form of itching and burning and other stuff but never a blister.
Some people like me take a while to show up positive on the igg. I showed positive on the Western Blot first eventhough I showed negative on the igg for like 13 weeks.
You could wait and retest or just send for Western Blot from University of Washington. If you are recently infected your body is rallying and trying to respond but in the mean time you will experience these symptoms until your body can get it in check. You can try the antivirals and see if they help. I am trying other things like supplements and Lion's Mane to combat a reactivation of symptoms that I am experiencing.
The Doctor's are going to tell you everything that will make you feel like you're crazy and that it is not HSV. Even the some of the so called experts will probably say that your symptoms are not related to HSV. Unfortunately, I and many others can tell you that HSV can cause these types of symptoms.
Hang in there! It may take a while for these symptoms to die down. Mine intial symptoms took over a year to really quite down. They just recently reactivated after my immune system took a hit taking the latest covid booster and flu shot. Hoping ot will calm down to the previous level.
Good luck and try to stay calm. Stress triggers this.
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@Bloomer I did try the generic Valtrex valacyclovir and I didn't notice any decrease in my symptoms. I am taking various supplements to improve nerve health and strengthen my immune system. I'm Taking that Lion's Mane that you mentioned and a few other B complex vitamins. I will see about the CMV test but I think it is just the HSV firing up. I feel a little better in the past couple of days so I am hopefully on track to getting back to where I was.
Thanks again for your advice and encouragement.
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@Bloomer The good news is that the nerve pain isn't constant. It comes and goes and it kind of manifests in different ways. It seems a little less but does have me a little worried because of my age. I'm 62 and worry that my immune system will get weaker and let the HSV run amok. I am trying to stay healthy and work a fee more years if I can.
I tried LDN like 5 years ago but I can't recall how effective it was. I kind of remember thinking it may have helped some. I know it doesn't work for everybody and you have to tweak the dosage to see what works.
I just came across a compounding pharmacy online that has it at the 4.5mg dosage so I am thinking about giving it another try. It's not really expensive like pain drugs and doesn't have the kind of down side of pain drugs. I'm lucky I do have an Dr. who will prescribe it for me.
I haven't been tested for neurotropic viruses. I will ask my Doctor to run some other tests.
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@Bloomer Thank you for your response and confirming that there are different strains of HSV. I am not sure of how I was infected whether it was through receptive oral or through intercourse.
I am lately experiencing a lot different nueropathy symptoms after the past few years of hardly noticeable symptoms. Taking the last Covid Booster did something to my immune system and the HSV seems to have fired up. Have you heard about LDN Low Dose Naltrexone to treat nueropathic pain?
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The Western Blot is the Gold Standard for testing. I didn't test positive on the igm or igg test for like 5 months. The West Blot confirmed I have HSV1. You have to order it through the University of Washington as I remember. They send you a kit with a tube and shipping box. It has to be shipped overnight as I recall. I don't think they offer it out of the US but I'm not sure. You should give them a call.
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Lions Mane is a natural antiviral from a mushroom with the same name. I am hoping it will help address the nerve pain also. Can't hurt to try it.
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Hello,
I have read that there are different strains of the HSV1 and HSV2 virus. Some are more nuero-invasive than others supposedly. My question is if I have GHSV1 that is one strain will my partner who has a different Oral HSV1 strain for years be protected from transmission of my GSHV1 strain?
This might be a question for a researcher or scientist but in general does anyone have an idea?
Thanks, Michael
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Hey @Ironman22 How is Nurica for nerve pain? Side effects?
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@Gemini 444 I read your information from another post. What type of HSV do you have?