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    • Miss Horne
      When I was diagnosed we were all gearing up for the Frazer, Gen003 and Halford therapeutic vaccines, all flopped. Pritlevir trials were suspended and there was nothing else really on the table. Some 6 years later Pritlevir has been fast tracked, Gen003 might be back in the running and a member of our forum is taking part in a monoclonal trial (with good results I understand). Best of all Dr Jerome has actually partially cured hsv in mice and thanks to our donations will be progressing to other animal modules soon. My point being time flies and there is so much more research going on now. I understand the frustration, we all do but please don’t get disheartened, like I say we are in a much better position now than we were just a couple of years ago. 
    • asdfz
      Hi, here seeking advice from those on Famvir for daily suppressive therapy. I’ve tried valtrex and get nasty side effects so I’m on Famvir. I was taking 375 every 12 hours which kept OBs away but I was getting 2 migraines a week. My doc said to try 250 every 8 hours. I’ve been on that about a week and constantly feel tingles. Is that normal when adjusting meds? Will it go away as my body adapts? Please help! 
    • Cas9
      @Ohsotired It took 10 years for mouse studies? Not sure if that's true, but anyway, it takes a while when starting out because you're kind of starting from scratch. That also involves in vitro work. Then you need to go to mice. So the in vitro and mice work is where a lot of the figuring out has taken place. It involved a lot of painstaking work. In fact Dr. Jerome started with an old style editor (CRISPR hadn't been invented yet). When he wasn't getting the results with whatever editor he was using, and CRISPR was invented, he then switched to CRISPR. He got worse results with that. His team then figured out what the issues were, step by step. And finally we are where we are; i.e. 90% and 50% cleavage in SCG and TG. And he knows what the issue is regarding improving those percentages to 90%+ in the DRG and TG. So a lot of the figuring out took a while and now we just need to see that it works in guinea pigs and then primates. Unless something goes wrong, and there's no reason to believe that it will, we are not going to take 10 years for each animal of course. If things go smoothly I would say 3 or 4 years. Then on to clinical. But we'll see. " Most researchers spend 3-6 years in the preclinical stage of research, 3-7 years in the clinical phase, and 2-5 years afterwards to launch the drug for public use. That’s Titans about 18 years in all for a drug to make it to mainstream. " So you chose the high end for each range. If I choose the low end for each it's 8 years. It's really impossible to predict. But I think the majority of us think that if it's successful it's at least 10 years away. Before your research, how long did you think the process would take? If it takes 10 years, how old will you be?
    • hk81
      The funding from NIH for the lab tests on mice will end in 2023, so this can give an idea on the timeline. https://grantome.com/grant/NIH/R01-AI132599-01A1 When the tests are moved to bigger animals (guinea pig and monkey), the possibility of experimentation is lower due to higher costs. The tests on monkeys are done only when the research has reached some solid results and only a few combinations are tested (see for example the tests done by ExcisionBio on monkeys for their CRISPR therapy for HIV). So I don't expect that (if everything works as expected) there will be bigger delays at that point. Usually when the funding from NIH ends, the research should have managed to run extensive tests on animals to gather further funding (often private) to move toward clinical trials. This period is called "the valley of death"; if there is not enough evidence that the therapy is effective, it will be more difficult to gather the attention of private investors and the research will run on lower funds and it will slow down or it will be stopped. Also: since it is a therapeutic application, the clinical trials might be faster than a prophylactic vaccine, unless side effects arise. There is no need to check that the therapy is protective on the long time, waiting for the participants to expose themselves to a pathogen (I also would not expect that they will check the condition of a participant for too long, because he might have exposed himself to another strain of herpes or the same one, if immunity will decrease after the therapy).  Hopefully once the first successful clinical trial, they will be able to get a fast-track and early-access as it happened with pritelivir.
    • asdfz
      Any CRISPR updates for HSV?
Lucy29

Constant prodome no outbreaks ??

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Lucy29

Hey guys 

i have had HSV2 for nearly 11 years now I’m 28 and contracted when I was 18 from my then boyfriend. He denied he had it and it must have been when  he was shedding as I never saw any sores on his penis. 

Anyways first ob was terrible as expected and then after until I was 25 I was completely asymptomatic. Then I started getting obs regularly and didn’t know what was happening they would happen  every month and alsmost always   around  my period so I went on suppression. 

In terms of sores I’ve had one since I have been on suppression for the last 18 months  and that was  during a time I ran out of tablets it was very mild and lasted about two days. However I have constant shooting pains and cold sensations in my thighs sometimes go down to my feet and I even get them in other   areas like hands but mostly in my legs.

 

I spoke to my sexual health doctor about this she also has herpes herself and was very open in telling me her story  she said to me out of all her patients she sees she has rarely herd of anyone who has this and she believes it’s not repeated to HSV2 especially as I get the sensation in other areas of my body. She also said if it was prodome she would expect it to follow with a sore which it never does. I don’t get the tingly and shooting in my vagina it’s always  in my  legs. But my vagina can be itchy a lot however unfortunately I suffer from recurring   BV so I’m not sure if this is one of the reasons. I have literally looked Down there with a torch 100 times I even went to my gum clinic when I felt these sensations and they saw nothing. 

 

Does anyone know what this could be ? It makes me feel contagious 247 and I wouldn’t have sex with these symptoms 

 

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Pirkar

Hi, I've something similar. I've had HSV2 for 15 years, and in the last few years I feel frequent prodome (a bit of itching) around vagina, or anus, but no sores, and my ob gyn can't see anything (maybe just a little bit redness on initial infection area). I also feel itching all over my body, but esp eyes, nostrils, hands. Sometimes nerve pain in tights (rarely). I'm not on a suppressive therapy. When I take Valtrex during these phases, it seems to help just a little bit, or not at all. I feel I'm shedding virus 24/7. I took HSV2 antibody serum test IgG and my titers were 10 x higher than reference. I think it means that virus is active, but because it's an old infection (15 years) the immune system keeps it at low level. However, due to stress etc I'm feeling now in a perpetual prodome.

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Anon8

@lucy29 @pirkar — have you found any relief? In a similar situation, terrified I’m persistently contagious..

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Lucy29
On 1/21/2019 at 6:18 PM, Anon8 said:

@lucy29 @pirkar — have you found any relief? In a similar situation, terrified I’m persistently contagious..

Hi anon.. I went to my consultant at the sexual health clinic last week turns out I have dermatitis on my vulva which explains the burning and itching feeling she prescribed me a cream and since then I haven’t had the itch really at all. I l also had thrush and BV. She did say that ppl who have hsv Assosiate anything down below with that but there are many other things it can be.  She also said ppl with hsv occasionally do get leg pain however it’s usually beflre or after an OB she said prodomes don’t happen 247 so she said my symptoms are very unusual if related to hsv. I also spoke to terri Warren an expert on hsv I paid to ask her a question and explained my symptoms she also said prodome feelings are not 24 7 and as I am on anti virals she does not feel as though these symptoms are hsv related and may be related to my back.

 My consultant also told me anti virals reduce transmission by 80-90 percent based on studies I actually found this study online after and she was right  I did not realise it was this high and thought it was only around 50 percent so this made me feel a bit better as I am on anti virals.

Maybe your symptoms are not related to hsv and could be other things. She did say to me as I am very focused on everything  down below some of it could be psychological I do agree as since I found out what the itch Was I have felt a bit of relief.

 

  

 

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blurneworder
On 11/2/2018 at 2:26 PM, Pirkar said:

Hi, I've something similar. I've had HSV2 for 15 years, and in the last few years I feel frequent prodome (a bit of itching) around vagina, or anus, but no sores, and my ob gyn can't see anything (maybe just a little bit redness on initial infection area). I also feel itching all over my body, but esp eyes, nostrils, hands. Sometimes nerve pain in tights (rarely). I'm not on a suppressive therapy. When I take Valtrex during these phases, it seems to help just a little bit, or not at all. I feel I'm shedding virus 24/7. I took HSV2 antibody serum test IgG and my titers were 10 x higher than reference. I think it means that virus is active, but because it's an old infection (15 years) the immune system keeps it at low level. However, due to stress etc I'm feeling now in a perpetual prodome.

Your experience is not at all unusual. 

I've not been diagnosed, but I have the symptoms you have. My blood work and swabs are negative, yet I have all the things happening to me that you do, but not obvious outbreaks,.

Edited by blurneworder

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Lucy29
6 hours ago, blurneworder said:

Your experience is not at all unusual. 

I've not been diagnosed, but I have the symptoms you have. My blood work and swabs are negative, yet I have all the things happening to me that you do, but not obvious outbreaks,.

How do you know it is related to hsv ? As I said on my previous response I have these symptoms and have been diagnosed 11 years ago but I was recently diagnosed with dermatitis on my vulva after I prescribed the cream the itchiness and burning  went it’s been a week now and I haven’t had any of this since using the cream . I also have been told I may have a problem with the nerves in my back causing the shooting pains. Not everything   is related to hsv not saying you don’t have it  but it might not be 

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Roja
7 hours ago, blurneworder said:

Your experience is not at all unusual. 

I've not been diagnosed, but I have the symptoms you have. My blood work and swabs are negative, yet I have all the things happening to me that you do, but not obvious outbreaks,.

Various medical professionals already told you everything looks normal. You have no outbreaks. Swabs and blood tests are negative.

Why do you want to have herpes? 

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tayelle
On 1/25/2019 at 6:46 AM, Lucy29 said:

How do you know it is related to hsv ? As I said on my previous response I have these symptoms and have been diagnosed 11 years ago but I was recently diagnosed with dermatitis on my vulva after I prescribed the cream the itchiness and burning  went it’s been a week now and I haven’t had any of this since using the cream . I also have been told I may have a problem with the nerves in my back causing the shooting pains. Not everything   is related to hsv not saying you don’t have it  but it might not be 

Did you see anything down there with the dermatitis? I've been b having increased burning on one side of my vulva, but I don't see anything. 

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Roja
11 hours ago, tayelle said:

Did you see anything down there with the dermatitis? I've been b having increased burning on one side of my vulva, but I don't see anything. 

Me too!! I have one very dry spot on my inner labia. I think it was the spot where my first OB was. 

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Purple Orchid

I had my first OB 6 yrs ago but was married and never formally diagnosed. I am getting divorced and had OB and was diagnosed by swab culture for hsv2. Since my initial OB I get tears around my anus. The Dr said I have pruitus ani which causes chronic itching cycle. It goes away but always comes back. I also have scar tissue that has started cracking open on perineum about once a month. I don't know if these are OB on Different area or completely unrelated. I went to Dr and they said my scar was cracking open but no real concern. Didn't feel it was related to possible herpes. Then my OB Dr said it wasn't an OB.at all.  My initial OB was on crease of leg and labia where umderwear edge is. I don't know if I am having OB all of the time or if it is something different. The drs that have seen it seem pretty confident it isn't herpes. So I don't know. My main symptoms with my OB area that was cultured is severe itchin, welts, and.gone in about 3 days. The other areas itch but no apparent welts but tears or cracks in skin. I am also beginning menopause as my periods are very irregular. So confused. Do you all get OB that are similar and in same area?

 

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emcee

I have also spoken to Terri Warren about my symptoms and she told me the same thing: herpes doesn't cause nerve pain every day. Yet here I am with nerve problems almost every single day. I believe I'm having constant outbreaks, I just usually don't get visible lesions until lately. So if you have constant outbreaks, it seems reasonable to me that you can have constant nerve pains. I have had many times in the past year and a half hot/cold nerve sensations in both legs from my hips down to my feet, which is perhaps similar to what you've described (only in my lower half though, not arms). Recently though, I'm experiencing chronic outbreaks in my right hip area and even when there are no lesions, there's pain there every day going on about 3 months.

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HSV2sucks

I’m having my first OB and nerve pains and sensations just like you describe. I’m also spotting. 

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HereAndNowLater

I have same symptoms. But less the that numbness pain behind the legs and more shooting pain all over now. I feel like it's gotten worse with time. 

And same. My GP was open with me because his wife has HSV 2 and he was convinced that she's never mentioned that and he's never heard of anyone having pain and not having an outbreak shortly thereafter. 

I'm convinced his perspective must be limited then because the shooting definitely HSV2 associated for me. 

My experience has been that doctors no nothing about Herpes symptoms outside of "obs" and "prodome' 

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