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17 hours ago, Lucy29 said:

@CHT hey have thought about stopping the val so I can swab  something but cos I’m in a relationship even if I wasn’t having obs I like to be on the val for transmissions reasons. But when I’ve stopped before it’s varied sometimes has been within  weeks other times  months never straight away though. It  is something I definitely want to consider cos I really want to swab a lesion but it’s just a matter of when. 
 

I am curious to do another blood test to see what the results is as well but I think really swabbing a lesion is the best thing to do. Tests here are about £70-80 online not sure what that is in dollars. so do you get the bloods free with a standard STD panel test in the US?

i have had leg pain since Monday, first in my right leg and yesterday in my left  leg again nothing visible down there at all. I honestly would rather just have outbreaks than all these leg pains  etc and not sure what it is. does the nerve   be pain suddenly start years later? As i never had this pain when I used to get monthly OBS before suppression. 
 

yeah my partner understands the concerns and doesn’t push for sex or anything . I thought women were less likely  to transmit to a man cos men have less mucus membranes on their penis ? And that women are more likely to catch it as their vaginas are basically  covered in mucus membranes ?  Are you a man?? I thought you were a female for some reason lol! 
 

Your friend is one of the lucky ones who never has obs, the clinic used to say that to me in those 7 years I never had one. Oh boy how that has changed  !  It’s good he has that mind set though it probably also helps him not have outbreaks cos he’s positive about it etc where   as we know worrying makes it  worse.  If I knew my partner had anti bodies I would  worry  a lot less I think. I live In a big city but I would be to scared  to even put my details and picture  on a online dating site for this silly cos I am buying in to the stigma myself by doing that.

I also belive that online dating sites for things such as warts and herpes buys into the stigma, nobody joins that  dating site if they just  have cold sores yet they can do  the exact same thing and  can transmit to the genitals. 
 

i have mini meltdowns when I get obs as well I just feel really upset and pissed off that this has happened. I know two other females with HSV2.. one was from years back so I don’t know how she suffers but the other one I was good friends with and she has quite a lot of OBs and she also has whitlow  on her finger that flares up alot .  
 

 
 


 

 

   
 


 

 

LOL.... yes, indeed, I'm a man!  Sorry there was a misunderstanding but, hopefully it makes no difference.... As I said, most men rarely have outbreaks.... I just had to be the exception!  Damn!    As for your leg pain.... the fact that it switches from leg to leg and it's that painful indicates to me that it's not likely HSV related.... did you already tell me you've been to an orthopedic specialist to have things checked?  Still sounds more sciatic related in my humble opinion.

I'm toying with the idea of getting another HSV2 IgG test done and then repeat maybe 6 months later.... I know I already have the virus but, when I read about people getting multiple tests and finding out they don't actually have it just got me thinking about it.... what if?  It's easy to get the test here, I could just go to my doctor, he'll order the blood test from local lab and my insurance will cover the price.  We also have the option of ordering the test anonymously on certain websites, then show up to designated lab for the test then they email you results.  I looked at a couple of these options in my area (Dallas, TX) and they cost about $45 (32 pounds in UK funds).  

Yes, you're right, I had it backwards, men are more likely to transmit to women then other way around.  This is one of the reasons women with HSV2 are nearly double the number of men with it (at least here in US).  

As for the online dating sites, I sort of agree with you but, yet my friend says it's been great for him.... my experience (many years back) was disappointing for two reasons: 1. I never seemed to meet anyone that I clicked with (sharing the virus just wasn't enough to overlook characteristics I could not handle) and 2. I found that so many people with HSV2 also had HIV..... it sort of freaked me out.... as you probably know, statistically, you have a significantly higher risk of contracting HIV after contracting genital HSV2.... I hated myself for my "HIV-phobia" but, I was already in meltdown mode over the HSV, I just could not take the risk of HIV on top of things!  One interesting sidenote on HIV/HSV..... if you have both, you are eligible to receive the drug, Pritelivir, free of charge from the manufacturer (a big German pharmaceutical company).  I tried to get into the "program" to get the drug and my doctor did his best too but, the representative (gate keeper in terms of who qualifies to receive drug) from the company interviewed me and my doctor separately.... answer came back a few days later saying "sorry, because you are not immunocompromised, we can't give you the drug at this time".  I was really disappointed..... if you've read about Pritelivir, all the studies to date show it is twice as effective of valacyclovir.... some have referred to it as a "functional cure" since the odds are so low of shedding the virus or having outbreaks. It's in phase 3 clinical trials (human) and there is a chance it could be marketed within a couple of years.....I'm having hard time being patient!

 

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Both of us have had a similar history..... after my initial diagnosis of HSV2, I had outbreaks almost weekly.... they were not super-severe but, from a mental health standpoint, I was absolutely miser

just found this online.... a small, recent, update on Pritelivir.... looks like they've found a way to make an improvement to the drug but, it does not provide much detail..... still is good news!  I

Wow did you notice where the article said that the tweaking involved making the molecule smaller so it can enter the nervous system?! And that symptoms didn't return after the drug was stopped?! This

@CHT ohh okay lol! Makes no difference anyways ! Yea that was also my understanding that men rarely have Outbreaks but also that most people don’t even know they have it I actually wish I was one of those ppl but then they are probably the ppl spreading it and not knowing.  My friend who also has it caught it from a one night stand with a stranger after a night out the first time she ever had unprotected sex in her life she didn’t know I had it at the time as I was to scared   to tell anyone I  had it for about 3 years at that point and I didn’t get obs.  2 days later she had the classic symptoms she was bed bound and couldn’t walk cos of the pain  and I just knew what it was  before she even went to the clinic and was diagnosed.  I still  didn’t have the guts to tell her ‘yeah me too’ until years later ! 
 

I haven’t had my nerves etc checked no or my back but I am looking in to seeing a neurologist but again very pricey if i wanted to be seen ASAP and not wait months on the NHS. I am thinking of getting private  health insurance which i guess is similar to what you guys have in the US just with insurance here  we get private care not the standard care.

I hear what you are saying regarding the blood tests but what  stops me doing that is my specialist said anti bodies can disappear over time  ?? So are  the bloods even a reliable way to test ? Would you not consider a western blot ?? Seen as you are in the US I would definitely  get one if I  could. I am toying with the idea of doing another one but the advice from both specialists  I’ve seen is don’t do it as it’s not reliable  

I also have a hiv phobia so I don’t blame you for feeling that way about the sites. Most ppl I saw on there had hsv and hpv as well I didn’t see many ppl with just hsv. In the U.K. we give the hpv vaccine to prevent that which I’ve had but I still wouldnt want to take the risk and certainly not with hiv. 

 

i have read about pritelivr a little bit on here but didn’t really look to much in to it. What about other conditions that are classed as auto immune diseases ? Can you get on the programme that way ? Maybe I should try it out or does it strictly  have to be hiv?  When you say a couple of years  do you think 2/3 or more? God I could not imagine that coming out  how many life’s it would change! I would feel like a new person. Is it a tablet you take everyday? Or an injection ?

 
 

 

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5 hours ago, Lucy29 said:

@CHT ohh okay lol! Makes no difference anyways ! Yea that was also my understanding that men rarely have Outbreaks but also that most people don’t even know they have it I actually wish I was one of those ppl but then they are probably the ppl spreading it and not knowing.  My friend who also has it caught it from a one night stand with a stranger after a night out the first time she ever had unprotected sex in her life she didn’t know I had it at the time as I was to scared   to tell anyone I  had it for about 3 years at that point and I didn’t get obs.  2 days later she had the classic symptoms she was bed bound and couldn’t walk cos of the pain  and I just knew what it was  before she even went to the clinic and was diagnosed.  I still  didn’t have the guts to tell her ‘yeah me too’ until years later ! 
 

I haven’t had my nerves etc checked no or my back but I am looking in to seeing a neurologist but again very pricey if i wanted to be seen ASAP and not wait months on the NHS. I am thinking of getting private  health insurance which i guess is similar to what you guys have in the US just with insurance here  we get private care not the standard care.

I hear what you are saying regarding the blood tests but what  stops me doing that is my specialist said anti bodies can disappear over time  ?? So are  the bloods even a reliable way to test ? Would you not consider a western blot ?? Seen as you are in the US I would definitely  get one if I  could. I am toying with the idea of doing another one but the advice from both specialists  I’ve seen is don’t do it as it’s not reliable  

I also have a hiv phobia so I don’t blame you for feeling that way about the sites. Most ppl I saw on there had hsv and hpv as well I didn’t see many ppl with just hsv. In the U.K. we give the hpv vaccine to prevent that which I’ve had but I still wouldnt want to take the risk and certainly not with hiv. 

 

i have read about pritelivr a little bit on here but didn’t really look to much in to it. What about other conditions that are classed as auto immune diseases ? Can you get on the programme that way ? Maybe I should try it out or does it strictly  have to be hiv?  When you say a couple of years  do you think 2/3 or more? God I could not imagine that coming out  how many life’s it would change! I would feel like a new person. Is it a tablet you take everyday? Or an injection ?

 
 

 

I love when you ask questions.... it forces me to dig a little deeper and get answers to things I haven't even thought about!  LOL.  Starting with Pritelivir (cuz this is one topic I am very very excited about).... it's a tablet, I believe it is taken daily.  I've read a few reports saying to take it along with Valacyclovir to lower your odds almost to zero for shedding/transmission but, I think it will be marketed as something you just take alone...... no valacylovir needed.  The great thing about Pritelivir is that it works equally well on immunocompromised people as immunocompetent people.... also, just as great news, it works on people with acyclovir-resistance.  It handles HSV in much different chemical fashion than does acyclovir drugs.  It is currently in trials for only immunocompromised people now..... I believe this has a lot to do with the fact that if you can show it helps people in more "desperate" medical condition (vs the ordinary folks like you and me who are healthy but have HSV) then it gets approval from gov't drug approval agencies much faster/easier.  For example, here in the US, AiCuris (German pharmaceutical company that makes the drug) has been given two big "boosts" from the US FDA (Food Drug Admin - they approve all drugs before going on the market in US).... they gave the drug "Fast Track" status and then last year they were given "Breakthrough Therapy" designation.... basically, both these things help push the trials, and approval of data through the gov't bureaucracy much faster.  So, the current thinking is that as long as the trials continue to show great results, the drug could be on the market by 2023 (originally there were forecasts of 2022 but, I think COVID slowed things down).  I asked my doctor if it could still be prescribed for people like me even if I'm immunocompetent.... he said "absolutely" and will do so as soon as it's on the market (I have a great doctor who also happens to be a great human being!).  I hope I'm not putting too much of my future hopes on the line with this drug but, I can't wait until it's available and perhaps I can go back to normal, non-obsessive, living without the occasional "mini-meltdowns"!  :)

If you're interested in seeing if you might qualify for the "early access" program for pritelivir, just go to: https://mytomorrows.com/en  then follow "patient" links and put in information as required (genital herpes.... United Kingdom, etc)...... it then starts a little online survey.... if you qualify, then you will set up an appointment over the phone (they are located in Amsterdam).... they also need to do the same interview with your doctor (separately). The company is called "My Tomorrows" and they work with the pharmaceutical company (AiCuris) to help make certain drugs available early to certain people in certain parts of the world.... great concept.  As I said, I went through the whole thing.... spoke with a very nice doctor in Amsterdam, my doctor did same and was very encouraged and then 2 days later we were told "NO" he's not immunocompromised.

As for the Western Blot, it is definitely the "gold standard" for HSV testing.... it is only available in one location in the world, University of Washington in Seattle.  It costs approximately $200 USD.  My understanding is that it has a lower risk of false positive/negative than even the IgG test.  I might talk to my doctor about this just out of pure curiosity.... I'm sure he would do it or refer me over to an infectious disease specialist to set it up.

I'm curious about your healthcare..... so, is it expensive to switch out of the NHS system over to private insurance?  Similar in prices to US?  Better quality care?  I have some friends that live in London and they like the NHS and aren't worried about long waits (I lived in Canada for many years and I could never go back to that long waiting to see doctors, get tests, or even line up for surgeries!).... I hate that our US system does not cover 100% of people but, selfishly, I am very happy with my private-employer based insurance system..... waiting is rarely ever a problem.

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@CHT I think I may have an outbreak ☹️ I’m not sure it’s not the usual spot type outbreak but there are some breaks in the the skin as I can see kinda fluid  coming out when a light is shined on it but it is over a wide spread area my entire left labia and it isn’t raised or anything. But I do have some leg pain. I’m on my period so it could be irritation from the sanitary towel as this has happened before and I went to the clinic and was told it wasn’t HSV but I kinda think it might be this time.. as my periods can be a trigger. Sucks if it is as I am on the 1 gram of val And have been taking religiously.  If I had ordered the swab  test  I would have swabbed the area but unfortunately I didn’t order it. I haven’t had much leg pain recently or  itching down there since I started using the dermatitis cream from the doctor so I thought I was on to something ! But  now this. What makes it worse is dermatitis can also kinda ‘ooze’ and also can be made worse from sanitary towels so I don’t know if it’s that or an outbreak it’s just so annoying ! When I get the outbreaks that start as raised spots and then turn  into lesions I know they are outbreaks but when it’s like this I can’t tell if it’s an outbreak or the dermatitis. I’ve been looking down there loads and pulling etc and touching which has just  made it even more red and inflamed so I don’t know what is going on! I can’t help myself !

I have looked into pritvir and it sounds promising! I would take anything at this point but I don’t think I will qualify for the trails if you didn’t either. Although dermatitis is classed as an auto immune disease I don’t think it’s one that would get me on the trial. 
 

i would get the western blot if  I could especially with having so many things going on down there and the fact the clinic cannot find my swab  I just wish it was available here in the U.K.  

If you chose to go private there are different levels of cover you can have some more expensive than others but you can also still use the NHS if you have private health cover as well it  you want To.  The wait isn’t always long it depends on the area you live and your Doctor. Some are better than others.  Covid has also made waiting times  a lot longer   than before. I waited for a hospital referral from jan- April this year. I’ve waited months in the past  to also see a dermatologist for other issues before  Covid. 

 

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10 hours ago, Lucy29 said:

@CHT I think I may have an outbreak ☹️ I’m not sure it’s not the usual spot type outbreak but there are some breaks in the the skin as I can see kinda fluid  coming out when a light is shined on it but it is over a wide spread area my entire left labia and it isn’t raised or anything. But I do have some leg pain. I’m on my period so it could be irritation from the sanitary towel as this has happened before and I went to the clinic and was told it wasn’t HSV but I kinda think it might be this time.. as my periods can be a trigger. Sucks if it is as I am on the 1 gram of val And have been taking religiously.  If I had ordered the swab  test  I would have swabbed the area but unfortunately I didn’t order it. I haven’t had much leg pain recently or  itching down there since I started using the dermatitis cream from the doctor so I thought I was on to something ! But  now this. What makes it worse is dermatitis can also kinda ‘ooze’ and also can be made worse from sanitary towels so I don’t know if it’s that or an outbreak it’s just so annoying ! When I get the outbreaks that start as raised spots and then turn  into lesions I know they are outbreaks but when it’s like this I can’t tell if it’s an outbreak or the dermatitis. I’ve been looking down there loads and pulling etc and touching which has just  made it even more red and inflamed so I don’t know what is going on! I can’t help myself !

I have looked into pritvir and it sounds promising! I would take anything at this point but I don’t think I will qualify for the trails if you didn’t either. Although dermatitis is classed as an auto immune disease I don’t think it’s one that would get me on the trial. 
 

i would get the western blot if  I could especially with having so many things going on down there and the fact the clinic cannot find my swab  I just wish it was available here in the U.K.  

If you chose to go private there are different levels of cover you can have some more expensive than others but you can also still use the NHS if you have private health cover as well it  you want To.  The wait isn’t always long it depends on the area you live and your Doctor. Some are better than others.  Covid has also made waiting times  a lot longer   than before. I waited for a hospital referral from jan- April this year. I’ve waited months in the past  to also see a dermatologist for other issues before  Covid. 

 

so, based on everything you've said so far, and the current description of your symptoms, I just can't see how this could be HSV2 going on right now.  The symptoms definitely sound much more likely to be the result of dermatitis or eczema.... if you can get into the clinic for an exam soon, and get the swab test, that would be great.... but, I know it's tough to do on short notice.  I know it's easy for me to say but, I'd relax and just assume it's not HSV2..... work on healing up the eczema/dermatitis (or whatever skin condition this it).

Just for the heck of it I googled "Western Blot for HSV2" and "UK" and found this site:  https://www.stdcheck.london/herpes-testing   I'm guessing you are already familiar with it..... but, when you scroll down, it does mention "Western Blot."   But not much direct information on getting the test itself.... it has a phone number so, it might be worth a call to ask about this test specifically.... who knows?!

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@CHT hey it hasn’t developed into any blisters today and the leg pain is less than yesterday but is still quite red and irritated but I can’t seem to see any sores or spots down there . I would have gone to the clinic today to get it checked out  but I cant  make it. 

Thanks for the link. I’ve came across that website before, I looked at it again and saw it mentioned western blot and I tried to book to see if it has it as an option but it doesn’t. I will contact them to see if they offer it.  Just wish I could get it done Somewhere here! I’d pay whatever it cost 

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17 hours ago, Lucy29 said:

@CHT hey it hasn’t developed into any blisters today and the leg pain is less than yesterday but is still quite red and irritated but I can’t seem to see any sores or spots down there . I would have gone to the clinic today to get it checked out  but I cant  make it. 

Thanks for the link. I’ve came across that website before, I looked at it again and saw it mentioned western blot and I tried to book to see if it has it as an option but it doesn’t. I will contact them to see if they offer it.  Just wish I could get it done Somewhere here! I’d pay whatever it cost 

I wonder if the Western Blot may be available in London but they ship it overnight to Univ. of Washington by some express medical shipping option?  It could be expensive in that case but, I'm sure if you call and it's an option they can give you more detail.  

No blisters, no lesions.... that's great..... again, I would bet it all that you aren't dealing with HSV2..... I wonder why with all the steroidal creams and lotions that these other problems (eczema/dermatitis) keep recurring?  Has a gyno given you any insight?  

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@CHT I will give them a call but I can’t see anything online to suggest they do that so I’m not sure but worth checking out. 
 

ive had the burning and itching sensations in the area that the specialist said is red from the excema since last night and worse today. I managed to get an appointment at the clinic today  but not with a specialist just with a nurse. She examined me and said she couldn’t see a thing and it looks normal she looked for sores internally as well and said there was nothing.  
 

she had taken swabs of the area for HSV and type  but she clearly is  not very experienced as if there is no lesion with fluid in then isn’t that just like swabbing a normal bit of skin ?? Part of me is scared for the result as if it is hsv then this is happening ALOT and sometimes several times  a week. This is really getting me down now and affecting my mental health. I’d rather normal blister monthly  outbreaks  than having to deal with all these symptoms then at least I know what it is 

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10 hours ago, Lucy29 said:

@CHT I will give them a call but I can’t see anything online to suggest they do that so I’m not sure but worth checking out. 
 

ive had the burning and itching sensations in the area that the specialist said is red from the excema since last night and worse today. I managed to get an appointment at the clinic today  but not with a specialist just with a nurse. She examined me and said she couldn’t see a thing and it looks normal she looked for sores internally as well and said there was nothing.  
 

she had taken swabs of the area for HSV and type  but she clearly is  not very experienced as if there is no lesion with fluid in then isn’t that just like swabbing a normal bit of skin ?? Part of me is scared for the result as if it is hsv then this is happening ALOT and sometimes several times  a week. This is really getting me down now and affecting my mental health. I’d rather normal blister monthly  outbreaks  than having to deal with all these symptoms then at least I know what it is 

Strange that she swabbed without any sign of lesions or any fluid at all to run a culture test.  She may simply have done it just to prove there is no HSV going on.... which is what I would guess given that you have no visible signs of typical HSV2 sores.  Your itchy situation is much more likely to be dermatitis or eczema.....I hope the health clinic link I sent can give you an idea as to options for the Western Blot test..... again, the more I read the more it sounds like the ultimate "determiner" for whether you have HSV or not.... so odd that it's not more easily accessible across the globe.... including here in US (I'm still debating whether to ask my doctor to run the test).

How soon will you get swab results?  My instincts tell me you are not dealing with HSV.... which is a great thing.... I recommend doing your best not to stress yourself over this (yep, I know, easy for me to say! :).... see what the results are and then you'll have better clarity on what's going on down there and you can hopefully rule out HSV2.

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@CHT I thought  it was strange as well as usually the clinics will refuse to swab if there is no fluid to take they  wont even swab a dry outbreak let alone a red bit of skin . Then she said if this is related to hsv the swab will tell. Well we all know that’s not the case as swabs without liquid lesions are very inaccurate and very rarely done. This is why I think she was very inexperienced also she swabbed me for sypfillis when I’ve recently had full blood works done and came back negative so I don’t know why she did that either. 
 

This wasn’t my usual clinic, and i Think  they would have refused to swab me  me I’m out of town at the moment so I just went to a clinic I found round here and had to explain my history to them all over again. She said I won’t get my results back for maybe over a week which seems very long, based on that I think she’s done the type of test where you see if the virus grows in the lab, I think there are two different types of swab tests you can do. 

I saw a post pinned on this site about a guy  who got a western blot sent  from Washington to the  U.K. he explained very clearly how he did it step by step but the post is from like 2014 or something.  it wasn’t even that expensive, some people on the post said they couldn’t get it done in the U.K. as a doctor would not spin their blood to serum but this guy said he didn’t need to have the blood spun and just had to get a doctor  to take it for him. If that’s the case and you don’t need the blood spun then I would consider  it. if I was you and you can afford it I would 100 percent do it! It I was in the US I know I would. 
 

if these itchy patches are not HSV then I will feel more at ease even  knowing I have the virus .. as I haven’t had a typical blister for over two months now. It just confusing me cos the steroids don’t seem to be keeping this at bay but neither are the antivirals so if it’s not either HSV or excema then  what  is it !! 
 

 

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@CHT hey me again lol! With some more confusing  news. Just been to see another consultant that the lady the other day booked for me when she took my swabs. Not my usual   clinic again  

why does every doctor say different things about HSV? It is honestly so frustrating. This one told me that you don’t need to just swab lesions to get a accurate swab for hsv and you can just swab red areas 😟.. this contradicts everything I read online and been told at any clinic before.  She also said in a long term Rship  if your partner doesn’t show signs of hsv in the first 6 months they either don’t have it or it’s always going to be controlled by their immune system and never show? Mmm dunno about that either 

She examined me.. said   skin is healthy doesn’t even look red and she wouldn’t have even done a hsv swab from looking at my vagina. She said it could be vulvodynia which is when nerve endings  are  irritated and can cause nerve pain and irritation  and redness in the vagina.. she said it is resolved by amyatriptiline (not sure  of spelling ) she said to tell me consultation back in London that  she’s suggested it . She said there isn’t even any signs of excema but that could be from the steriods clearing it up. Like wtf is even going on. 

she also said 1 gram of val is  not  a suppressive dose and is a treatment dose and is very strong. She said it is very very unlikely that id be  getting HSV related symptoms on  that dose and they my nerve pains are absolutely not HSV.   But  We know that it can happen as it happened to you and your not even immunocompromised !

 

Very  confused now 

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16 hours ago, Lucy29 said:

@CHT hey me again lol! With some more confusing  news. Just been to see another consultant that the lady the other day booked for me when she took my swabs. Not my usual   clinic again  

why does every doctor say different things about HSV? It is honestly so frustrating. This one told me that you don’t need to just swab lesions to get a accurate swab for hsv and you can just swab red areas 😟.. this contradicts everything I read online and been told at any clinic before.  She also said in a long term Rship  if your partner doesn’t show signs of hsv in the first 6 months they either don’t have it or it’s always going to be controlled by their immune system and never show? Mmm dunno about that either 

She examined me.. said   skin is healthy doesn’t even look red and she wouldn’t have even done a hsv swab from looking at my vagina. She said it could be vulvodynia which is when nerve endings  are  irritated and can cause nerve pain and irritation  and redness in the vagina.. she said it is resolved by amyatriptiline (not sure  of spelling ) she said to tell me consultation back in London that  she’s suggested it . She said there isn’t even any signs of excema but that could be from the steriods clearing it up. Like wtf is even going on. 

she also said 1 gram of val is  not  a suppressive dose and is a treatment dose and is very strong. She said it is very very unlikely that id be  getting HSV related symptoms on  that dose and they my nerve pains are absolutely not HSV.   But  We know that it can happen as it happened to you and your not even immunocompromised !

 

Very  confused now 

I can see how you could be very confused!  This new doctor has completely confused me with the statement about just swabbing "red areas"  there has to be fluid in order to get a proper culture and you didn't have that so, I still don't see the point of the swab.  I know they can swab in clinical studies to determine if you are shedding the virus without actually having lesions or sores but, that's a whole other type of swabbing.... maybe that's what the doctor was referring to??  I agree too that you really didn't need the swab in the first place.... will be interesting to see results but, I guarantee it will be negative.  At least this doctor gave you some kind of diagnosis for the nerve pain and redness but, I have to say, you seem to get so many differing opinions for your condition from each doctor/specialist you see!  One sees eczema, another dermatitis, and now this new on "amyatriptiline??"  No wonder you're confused.... but they all seem to say the same thing about HSV2 which is that they just don't see it.  That's a good thing!!

I definitely disagree with the valtrex at one gram for suppression.... however, I know some reports say 500 mg/once daily is sufficient but, others say 1 gram is needed but, I believe it depends on how many outbreaks you get a year.  If I'm not mistaken, if you get more than 8 or 9 outbreaks per year 1 gram daily is recommended.... less than that it's 500 mg.  You possibly could get away with just 500 mg and see if that's all you need....it might be worth experimenting.  And yes, you are correct, I most definitely get outbreaks even on 1g of valtrex and my immune system is not compromised.  Although, I must report that since I went back on 1 g of valtrex daily (instead of famvir) about 6 weeks ago, I've had no problems at all....I pray that does not all of sudden change!

As for the relationship comment.... that has me stumped.  I've never heard that theory before.... but, I guess what she/he is saying is that if you are having unprotected sex, while on valtrex, and he never has an outbreak over a long period of time then there's a good chance he already has the antibodies or the outbreaks are undetectable.... still, not sure that's absolutely true..... I would definitely ask your partner to get a IgG blood test to prove he does not already have the antibodies for HSV2.... if he doesn't, then he's still at risk, no question (this assumes you are definitely positive for HSV2 which if I remember correctly, your levels were very low which still leaves me questioning your true HSV2 status).  

When you get back home to London you'll have to go over some of these "alternate theories" from your doctor you saw out of town.... plus hopefully that swab test will show it was a waste of time.

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@CHT I know it’s just tiresome now because everyone is saying different things. The new possible Diagonsis of vulvadynia actually makes sense  I googled it.. it causes nerve pain and it causes irritation burning and itching in the vagina when there is nothing to see on the skin.. and that’s exactly what I have. Only issue is the meds for it can be addictive and cause weight gain not something I want but I might try them out. I’d have to to my GP for that though as they won’t prescribe via  the sexual health clinic. 
 

if this swab comes back negative I think I am going to follow the guy from the UKs instructions on this forum who also got a WB and get it done. 
 

I think your right regarding the valtrex dose.. I mean the only Reason I’m taking so much is cos I am associating all these symptoms  I’m having to HSV but if they aren’t related then they won’t go away regardless of the dose I am on… and they haven’t the only thing that has stopped is the actual obvious blister outbreaks. Surely they wouldn’t stop but all the other symptoms remain ? And when I think about it I’ve had hsv 13 years and only the last 3 years I’ve had nerve pain  surely if it was related to the HSV I’d have had it the entire time I’ve had HSv right ? I didn’t even get nerve  pain when I had monthly outbreaks.  
 

Unfortunately  my partner Won’t get the blood test he is very anti getting tests  done etc  woulsnt even get Covid  tests so asking him would just be  pointless. He has told Me he’s had a cold sore  before so I know he has hsv1 anti bodies 

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On 6/26/2021 at 4:17 AM, Lucy29 said:

@CHT I know it’s just tiresome now because everyone is saying different things. The new possible Diagonsis of vulvadynia actually makes sense  I googled it.. it causes nerve pain and it causes irritation burning and itching in the vagina when there is nothing to see on the skin.. and that’s exactly what I have. Only issue is the meds for it can be addictive and cause weight gain not something I want but I might try them out. I’d have to to my GP for that though as they won’t prescribe via  the sexual health clinic. 
 

if this swab comes back negative I think I am going to follow the guy from the UKs instructions on this forum who also got a WB and get it done. 
 

I think your right regarding the valtrex dose.. I mean the only Reason I’m taking so much is cos I am associating all these symptoms  I’m having to HSV but if they aren’t related then they won’t go away regardless of the dose I am on… and they haven’t the only thing that has stopped is the actual obvious blister outbreaks. Surely they wouldn’t stop but all the other symptoms remain ? And when I think about it I’ve had hsv 13 years and only the last 3 years I’ve had nerve pain  surely if it was related to the HSV I’d have had it the entire time I’ve had HSv right ? I didn’t even get nerve  pain when I had monthly outbreaks.  
 

Unfortunately  my partner Won’t get the blood test he is very anti getting tests  done etc  woulsnt even get Covid  tests so asking him would just be  pointless. He has told Me he’s had a cold sore  before so I know he has hsv1 anti bodies 

the good thing about vuvodynia is that it typically not last more than a few months..... you know the symptoms best so, if vuvodynia symptoms match what you are feeling then I strongly support your theory that's what you have.... not HSV.  So, backing off valtrex might not be a bad idea, particularly since you  have no lesions and every doctor/specialist you've seen so far clearly thinks this is not HSV.... I envy you actually!  Let me know about the WB test.... surely there's a way to get it done from the UK or anywhere in Europe.... that should hopefully solve the big mystery here.... I'm still betting it's not HSV.  Let me know the results of your swab test when you get it.... I will be super shocked if it shows positive.

that's interesting about your partner's unwillingness to get any testing done.... with age he may have to change that approach as different problems start cropping up as we get older!  :)   I'm the polar opposite..... if I think something's not right about my health, I want a test to figure out what's wrong because I want it fixed up quick!  I hate being sick..... which is precisely why my HSV-status bothers me more than the usual person ..... I just can't "fix" this problem!  It's for life (or until a cure comes along.....soon I hope!).... so it's hard for me to "accept" and not think about it way too much!

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@CHT if it only lasts a few months then it can’t be that as I have had this for years but what I have read is that it comes and goes and can basically stay around forever. 
 

im just really down about all of this right now, yesterday I had really bad swollen labia minoria I had a closer look and could see red lesions not blisters but defo weeping red lesions on that area and my clit on both sides and it was seriously  swollen. Last   time I had these symptoms it was thrush.  I put the thrush cream on and it burned like hell but today it has settled down quite a lot but still some redness remaining. Anyways when I was looking down there this morning I noticed a dreaded spot on one side which looks like how my definite outbreaks start.. first one I’ve seen in a long time  time and I have the dreaded leg ache. It’s not an open lesion at the moment it just looks like a pimple. 

I have managed to  get a telephone app  with my usual  gum clinic this morning and I hope they will see me today so they can swab all of this.   I am going to exaggerate so they will see me in person otherwise they won’t. Thing is I want to see my  consultant and I doubt she will be available ,  the nurses who just do the general std tests don’t seem to be that well informed. 
 

This is really really getting to me now, me and my partner have broken up ( not related to any of this ) and I have been under serious stress all last  week and felt shit. I have probably had 1 or two days in the last week where my vagina has felt normal.  I definitely think this is an outbreak this time as the leg pain feels different. 
 

I never used to get outbreaks when I first started suppression so I just don’t know what is going on. I’ve had this for 13 years so you’d think I’d learn to live with it and I did for the most part but it is really bothering me at the moment.. I feel it’s actually causing a slight depression it’s on my mind 24/7 I find myself reading this forum alot  and  just constantly  googling stuff.  Cos I feel shit I then eat shit sleep shit and don’t take care of my body as I should which of course doesn’t help with the symptoms. 
 

many people think hsv is just  classic blister symptoms and that’s what you see on google, but it doesn’t always present like that especially when on suppression and as I have other issues genitally as well i never know what the hell is  going on down there!. I’m at the point where I feel I need to date someone with this virus or I don’t date  at all cos regardless of what these doctors say about transmission I am not imaging these symptoms !  

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On 6/28/2021 at 3:39 AM, Lucy29 said:

@CHT if it only lasts a few months then it can’t be that as I have had this for years but what I have read is that it comes and goes and can basically stay around forever. 
 

im just really down about all of this right now, yesterday I had really bad swollen labia minoria I had a closer look and could see red lesions not blisters but defo weeping red lesions on that area and my clit on both sides and it was seriously  swollen. Last   time I had these symptoms it was thrush.  I put the thrush cream on and it burned like hell but today it has settled down quite a lot but still some redness remaining. Anyways when I was looking down there this morning I noticed a dreaded spot on one side which looks like how my definite outbreaks start.. first one I’ve seen in a long time  time and I have the dreaded leg ache. It’s not an open lesion at the moment it just looks like a pimple. 

I have managed to  get a telephone app  with my usual  gum clinic this morning and I hope they will see me today so they can swab all of this.   I am going to exaggerate so they will see me in person otherwise they won’t. Thing is I want to see my  consultant and I doubt she will be available ,  the nurses who just do the general std tests don’t seem to be that well informed. 
 

This is really really getting to me now, me and my partner have broken up ( not related to any of this ) and I have been under serious stress all last  week and felt shit. I have probably had 1 or two days in the last week where my vagina has felt normal.  I definitely think this is an outbreak this time as the leg pain feels different. 
 

I never used to get outbreaks when I first started suppression so I just don’t know what is going on. I’ve had this for 13 years so you’d think I’d learn to live with it and I did for the most part but it is really bothering me at the moment.. I feel it’s actually causing a slight depression it’s on my mind 24/7 I find myself reading this forum alot  and  just constantly  googling stuff.  Cos I feel shit I then eat shit sleep shit and don’t take care of my body as I should which of course doesn’t help with the symptoms. 
 

many people think hsv is just  classic blister symptoms and that’s what you see on google, but it doesn’t always present like that especially when on suppression and as I have other issues genitally as well i never know what the hell is  going on down there!. I’m at the point where I feel I need to date someone with this virus or I don’t date  at all cos regardless of what these doctors say about transmission I am not imaging these symptoms !  

Hey Lucy.... very sorry you are feeling so down.... this issue in your vagina is really stressing you out and I certainly understand your situation (from a male perspective)..... very sorry about your relationship.... is it just a temporary break or is it over?  That issue is just adding tremendously to your stress I'm sure.... lack of sleep, eating poorly, and constant checking your problem zone is just adding to your stress too and you know what stress can do as it relates to HSV!  I'm also guessing you are dealing with some level of depression.... that's perfectly understandable given your situation but, do NOT let it get out of control.... do your best to stick to your normal daily routine and try to do things that calm you down and cheer you up a bit (funny movie/sitcom, hot bath, long walk, call friends/family, etc) whatever just raises your mood just a little can help you from slipping deeper into a depression.... Also, don't even start thinking about new relationships right now.... that's just more stress you just don't need..... that's something you can work on later when you are in a better situation. It's time for you to work on figuring out what's going in the vagina area and working to reduce that stress level.  One other thing too.... I suggest you not spend too much time online researching the HSV issue etc.... it's good to do some checking now and then but, it can be all consuming and you obsess over it to the point you can't take a break.... you need to take a break and not research it to death (I'm guilty of this in the past too!)

Here's my humble opinion.... get that sore(s) on your labia looked at by a specialist, swabbed if possible but keep in mind, it's hard to get a good swab from just one lesion especially if it's not producing any fluid.  I still believe it's more likely you are dealing dermatological issues down there, not HSV.  When do you talk to the specialist about the option of a WB test?  Soon I hope.  Are you taking your valtrex daily?  1 gram or did you go down to 500mg?  I still doubt your current situation is HSV especially after you applied the cream (for thrush?) but, tough to say with certainty without the proper testing.  

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@CHT so I got my results today.. the red  area with NO lesions or breaks in the skin  whatsoever is positive for HSV2. I’m shocked and really concerned and feel like i could actually cry right now. That means I am having seriously regular outbreaks with not a single lesion on the skin which was even confirmed by the nurse she said the area looked normal ! I get that itchy feeling in that area several times a month sometimes several times a week.. sometimes it lasts a few hours and then goes.  This has been going on for years! And I have constantly been told it is dermatitis. 

i am not due to see my normal doctor untill September but I have  been told I should book an appointment sooner to discuss why this is happening on suppression.   
 

i really don’t know what To  think or where to go from here. My virus must be seriously active.  I have been to several different doctors even consultants when I have had this feeling over the last 3 years and they have all said there is so sign of HSV. I feel like just giving up on the suppression it clearly isn’t working anyway 

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  • 2 weeks later...

@CHT hey just thought I’d come on and update my outbreaks are crazy at the moment 😢 so the red patch was positive for HSV2 but the sores I had a few days after we’re negative and positive for Thrush. 

I decided to go down to 500mg because the 1gram was clearly not completely  suppressing the virus  and I thought what’s the point in being on such a high dose .  Since then I am now on my 2nd outbreak ( actual blister/sore) I have literally just had one clear up and now another one is back again.  I’ve started to take some supplements only since the last 4 days so won’t know if they are working yet but this is so depressing. 
 

I wasn’t due to see my specialist till 9th September and I asked for it to be brought forward but she won’t see me till 9th of august so still another 4 weeks.  I started to think all sorts that maybe I was imunnocompromised and had HIV or something so I did 3 tests all which were negative. 
 

I am so stressed right now I’m still not with  with my partner and we are arguing constantly… it’s a good job we aren’t together cos sex would be off the cards completely.  I have never in 14 years of this virus experienced so many outbreaks and I’ve never had an outbreak on suppression untill now. I am at a loss of what to do I really am 

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13 hours ago, Lucy29 said:

@CHT hey just thought I’d come on and update my outbreaks are crazy at the moment 😢 so the red patch was positive for HSV2 but the sores I had a few days after we’re negative and positive for Thrush. 

I decided to go down to 500mg because the 1gram was clearly not completely  suppressing the virus  and I thought what’s the point in being on such a high dose .  Since then I am now on my 2nd outbreak ( actual blister/sore) I have literally just had one clear up and now another one is back again.  I’ve started to take some supplements only since the last 4 days so won’t know if they are working yet but this is so depressing. 
 

I wasn’t due to see my specialist till 9th September and I asked for it to be brought forward but she won’t see me till 9th of august so still another 4 weeks.  I started to think all sorts that maybe I was imunnocompromised and had HIV or something so I did 3 tests all which were negative. 
 

I am so stressed right now I’m still not with  with my partner and we are arguing constantly… it’s a good job we aren’t together cos sex would be off the cards completely.  I have never in 14 years of this virus experienced so many outbreaks and I’ve never had an outbreak on suppression untill now. I am at a loss of what to do I really am 

Hi Lucy.  Sorry to hear you are stressed out over the outbreaks..... not to mention the arguments with your former partner.... all this stress is not good for your HSV situation..... I'm very surprised the red patch was positive for HSV2.... were there any lesions at the time?  Just a red patch?  That just sounds very strange to get a swab test that shows positive.

Are you sure you want to cut down on the Valacyclovir?  I suggest you may want to talk with your doctor on this first.... if you've already had two more outbreaks since cutting your Val into a half dose, that may be your signal that a full 1 gram was helping to some degree....What supplements are you trying?  I'm a big supplement fan, as I think I've mentioned.  I am not at all sure they are making a big difference but, I have no doubt they are boosting my immune system and that's a good thing no matter how you look at it.  I'm still doing my 1 g Val per day and no problems to report.

Are you still using any steroidal creams on your vaginal area for the thrush or eczema?  If so, I still wonder if they are helping trigger the outbreaks.... just a though. 

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@CHT I know this stress I probably making things 10 x worse, I mean the outbreaks are very minor but they are definitely outbreaks and they are pretty much back to back atm. 
 

no lesions at all. Even the nurse was surprised this was the area I’d constantly been told was excema which I’d been putting steriod cream on which probably made it even  worse . No wonder ppl spread this without  knowing , if I hadn’t made my own decision to not have sex when that red patch kept reoccurring I’d have easily passed this on. 
 

I do want to cut down as I’ve also been doing some reading  on here and I’ve read that anti virals over time can reduce your anti bodies and make your immune system lazy to the virus. This could explain why my anti bodies were so low.  I also find that even though I’m having ‘proper outbreaks’ when I’m not on the val I don’t get as much leg pain and itchyness unless I have an actual  sore.  I need to let my body try and fight this and being single is the perfect time  to do so. 
 

I am just confused as to why I’m getting so many as I’ve stopped anti virals before  and this has never happaned so soon. I guess all I can put it down to right now is stress. 

I take vitamin D as I am always lacking that on blood tests, Vit C , bee propolis and sea moss gel at the moment. 
 

My  body managed to fight this for 7 years Witt not a single outbreak and I just really want to know what the hell changed ! Like I said only difference back  then was I had the implant  birth control and didn’t have periods . but I really don’t want to try that again as once they insert it they are very reluctant  to remove it before  the 3 years and is like kids before then. 
 

I’m glad the 1g of val is working again for you. How did you find famvir?

 

no I’m not taking any steriod cream again and I’m so annoyed at the doctors for even prescribing  this when it clearly was not even needed ! 

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I didn't read the whole thread yet, but there's some guys in these forum dismissing hsv symptoms, any symptoms of hsv for them do not exist. Especially that WilsonAus guy, extremely annoying. 

Your symptoms seem to be from HSV2, like your swab test said, don't listen to these guys, even if you bring them proof of 999 swab tests they'd still say it might be other things and suggest you other tests like blood tests etc. 

The reason why your blood test is on the lower side, could be because you are using antivirals/ and because you have been infected for so many years. 

 

 


I suggest you to stop taking antivirals (you might get more OBs, but your immune system will get stronger at fighting HSV), stop having sexual relations, and take Varivax vaccine, it might help diminish the OBs quantity and severity (it did for me and others). 

I just took the BCG vaccine, I will report in few months if it helped. 

When I first got HSV2 (November 2019) I was getting non stop OBs, then 1 per month. After 4 varivax vaccines, I am getting very very small/mild OBs every 3/4 months. 

I don't use any antivirals. I often get exhausted from training and playing football, I don't watch my diet and I don't always sleep well. 

 

I am interested to know, how come you didn't get any outbreak the first 7 years? What were you into? 

 

 

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18 hours ago, Lucy29 said:

@CHT I know this stress I probably making things 10 x worse, I mean the outbreaks are very minor but they are definitely outbreaks and they are pretty much back to back atm. 
 

no lesions at all. Even the nurse was surprised this was the area I’d constantly been told was excema which I’d been putting steriod cream on which probably made it even  worse . No wonder ppl spread this without  knowing , if I hadn’t made my own decision to not have sex when that red patch kept reoccurring I’d have easily passed this on. 
 

I do want to cut down as I’ve also been doing some reading  on here and I’ve read that anti virals over time can reduce your anti bodies and make your immune system lazy to the virus. This could explain why my anti bodies were so low.  I also find that even though I’m having ‘proper outbreaks’ when I’m not on the val I don’t get as much leg pain and itchyness unless I have an actual  sore.  I need to let my body try and fight this and being single is the perfect time  to do so. 
 

I am just confused as to why I’m getting so many as I’ve stopped anti virals before  and this has never happaned so soon. I guess all I can put it down to right now is stress. 

I take vitamin D as I am always lacking that on blood tests, Vit C , bee propolis and sea moss gel at the moment. 
 

My  body managed to fight this for 7 years Witt not a single outbreak and I just really want to know what the hell changed ! Like I said only difference back  then was I had the implant  birth control and didn’t have periods . but I really don’t want to try that again as once they insert it they are very reluctant  to remove it before  the 3 years and is like kids before then. 
 

I’m glad the 1g of val is working again for you. How did you find famvir?

 

no I’m not taking any steriod cream again and I’m so annoyed at the doctors for even prescribing  this when it clearly was not even needed ! 

Hey Lucy..... remind me again, you've had two swab tests that were positive for HSV2 but, I can't remember what your blood test result was... (the IgG test specific to HSV2)?  Wasn't it borderline?    I'm stumped as to why you continue to have outbreaks..... I know for me they started all over again after nearly 5+ years of being outbreak free due most likely to the high dose of Prednisone I took in early 2019 for 3 days.... but you haven't taken anything like that, correct?  No coritcosteroids at all, right?  

As for famvir, it works very similar to Valtrex .... both are acyclovir based..... some people seem to have better luck with one drug versus the other.... you might want to talk to your doctor/specialist about famvir.... perhaps it might work better for you than Val does.... it's basically the same cost as Val (at least over here in US).  

Have you and your doctor/specialist discussed the possibility of acyclovir-resistance?  There is a very specific test for this so, your doctor may be very reluctant to run it but, it might be worth asking.  It's very rare to have an otherwise healthy person (immunocompetent) develop acyclovir-resistance so, it's not likely what's going on here but, it's worth asking about it.....

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@Amnprsc thanks for your reply I agree that the blood test is likely low as i have been on anti virals but several doctors have told  me the length of time you have it doesn’t effect anti bodies so I don’t think this is the case, I think it’s more that I’ve been on anti virals for years on and off.

 

I hope you don’t mean stop having sexual relations totally?  cos that isn’t an option for the rest of my life but I certainly won’t be whilst I am having alot of outbreaks.  I have cut down my val to 500mg a day instead of 1gram and already had two outbreaks in two weeks they are small though and last 2 days 3 max so I will stick to 500g for now but eventually I want to completely come off. 
 

is that the chicken pox vaccine ? I can get that here in the U.K. but I have read it has no affect on the herpes virus ? I had the BGC vaccine as a kid and I don’t think it’s offered here in the U.K. if you have already had it. 

the only noticeable difference I can think of in the first 7 years  was I didn’t have periods as I was on birth control. I was on the implant you have in your arm, I don’t really want to get this again as like I said up the thread it’s inserted for 3 years  I would like kids sometime before then. my diet was probably even worse in those years as I was a student and living on campus, however I did have a lot  less stress than I do now and I rarely ever stressed about HSV but probably because I didn’t ever get bothered by it. I wasn’t on anti virals didn’t  take any supplements etc and I didn’t get one outbreak in 7 years 

 


 

 

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@CHT Hey I had one positive swab test and my bloods were borderline yea, but I am in no doubt this is 100 percent HSV.  I have been told my many doctors etc that sometimes the virus  just becomes active and they don’t know why.  You may think that yours started because you took the prednisone but in all honestly that could be a coincidence, because I think you said they didn’t stop when you stopped the prednisone which if that  causes them  youd assume they would

in those 5 years were you out break free but on suppression  ? .   As I wasn’t on anything at all when I was outbreak free for 7 years nor did I take supplements 

I will talk  about famvir at my appointment in august but I really want to stay away from anti virals tbh  

I don’t think my doctor would do the resistance test as they have said how rare it it . Plus I don’t think I have that as I don’t get actual sores when on val but other symptoms so it obviously supresses it to some extent    

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@Lucy29 do you have other symptoms you may be dismissing like mouth ulcers (canker sore type), blurred vision, skin sores elsewhere, joint pain, numbness in limbs, muscle spasm, headaches, memory issues, anxiety/depression (not just from HSV) things that go along with autoimmune or inflammatory conditions? 

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      I just stared dating someone who does not have HSV.How long after the sore is healed should I wait before having sex?  I’ve had HSV2 for over 10 years. I rarely have outbreaks going months even years until recently. When I do I get some tingles and one sore in the same spot. But recently, In the last 3 months it’s happened twice. 🤦🏼‍♀️
    • JDMT_176
      If you want to know whats going on when applying it, this was the only study I found describing it. Hard to read through as very technical, but am copy paste parts I found of use. Tables also useful to show which genes are expressed more.  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6416766/   "A petrolatum donut was applied with a cotton swab to form about a 1 cm diameter donut on skin on the inner aspect of the upper arm. Then a separate cotton swab was dipped in a 2% SADBE solution (w/v) in DMSO, and the swab was then used to apply about 10–20 mg of solution over about a 1 cm diameter circle within the petrolatum donut. Immediately after application, the application site was covered with TEGADERM. Subjects were advised to remove the TEGADERM and rinse and wipe the spot 3 h later.   "Thus in essentially every case, the SADBE treatment changed the group A subjects by day 57 to make them much more like the group B and C subjects who have better immune control of their HSV‐1 infection than the group A subjects were on day 1.   "Others have previously shown that CD8+ T cells are important in controlling herpes labialis outbreaks.23, 24, 25, 26, 27, 28, 29, 30, 31, 32 Our data are consistent with this. The helper/cytotoxic cell ratio (CD4+/CD8+ ratio) was 5.25 in group A versus 3.07 and 3.15, respectively in groups B and C (Table (Table3).3). The P‐value is less than 0.20 for comparisons of group A to both groups B and C, and if groups B and C are pooled and compared to group A the P‐value is 0.065, almost significant. This is consistent with prior evidence discussed below that CD8+ T cells are important and effective in controlling HSV recurrences.   "Consistent with our finding lower anti‐HSV‐1 IgG levels correlate with better control of HSV‐1 outbreaks, Spruance et al. also found lower serum anti‐HSV‐1 antibodies in HSV seropositive patients with a history of frequent herpes labialis than in seropositive persons with no history of herpes labialis.33   "Several prior reports also found IFN‐gamma to be important in controlling HSV infection and reducing HSV outbreaks. Dobbs et al28 showed that CD8+ T cells were able to clear an HSV‐2 infection in transgenic mice, but that efficacy was blocked in vivo by anti‐IFNG IgG. Liu et al31 showed that CD8+ T‐cells could prevent HSV‐1 reactivation from latency in excised trigeminal ganglia (TG), and that IFN‐gamma protein was produced by the CD8+ T cells, and that neutralization of IFN‐γ significantly enhanced the rate of HSV‐1 reactivation from latency in TG cultures. Spruance et al33 found that IFN‐gamma protein levels in PBMC supernatants stimulated with HSV‐1‐infected cell extracts were lower in frequent herpes labialis sufferers than HSV‐1 seropositive controls, consistent with the present result for IFNG gene expression in PBMC stimulated with heat‐killed HSV‐1. McKenna et al7 assayed IFN‐gamma in medium of PBMCs cultured in vitro and stimulated with inactivated HSV‐1 and found IFN‐gamma was at higher concentrations in medium of PBMCs from infrequent herpes labialis sufferers than frequent sufferers, also consistent with our findings. Cunningham et al34 showed higher interferon levels (including alpha, gamma, and lambda) in supernatants of PBMCs stimulated with heat‐killed HSV‐1 virus correlated with longer time to next herpes labialis recurrence. Carr et al35 showed that transgenic expression of IFNG could prevent HSV‐1 reactivation in a mouse model.
    • JDMT_176
      Hi Kurdt- I was thinking back in 2018-2019 there was several threads from viral frog that he was applying a 2% solution very frequently. Like several times a week. From what I gather- it didnt work for him at the time. I think too much applied caused immune chaos or something.  The most recent Square X trial was terminated but this was the dosing frequency that was used in the trial below: I was planning on using Group C protocol. Group A is most frequent. Something to think about.  https://clinicaltrials.gov/ct2/show/results/NCT03521479?term=squarex&draw=1&rank=4   Protocol:  Arm/Group Title Group A Group B Group C Group D  Arm/Group Description Treated with 2% Squaric Acid Dibutyl Ester (SADBE) on day 0 and with 2% SADBE on the visits at week 3, week 6, week 9, and month 8. Squaric Acid Dibutyl Ester: Repeat topical application of 2% and 0.5% squaric acid dibutyl ester (SADBE) in subjects with frequent herpes labialis (4 or more episodes in the previous 12 months). Treated with 2% Squaric Acid Dibutyl Ester (SADBE) on day 0 and with 0.5% SADBE on the visits at week 3, week 6, week 9, and month 8. Squaric Acid Dibutyl Ester: Repeat topical application of 2% and 0.5% squaric acid dibutyl ester (SADBE) in subjects with frequent herpes labialis (4 or more episodes in the previous 12 months). Treated with 2% Squaric Acid Dibutyl Ester (SADBE) on day 0, month 3, and month 6. Squaric Acid Dibutyl Ester: Repeat topical application of 2% and 0.5% squaric acid dibutyl ester (SADBE) in subjects with frequent herpes labialis (4 or more episodes in the previous 12 months). Treated with 2% Squaric Acid Dibutyl Ester (SADBE) on day 0 and month 6. Squaric Acid Dibutyl Ester: Repeat topical application of 2% and 0.5% squaric acid dibutyl ester (SADBE) in subjects with frequent herpes labialis (4 or more episodes in the previous 12 months).   Adverse Reaction Table: Arm/Group Title Group A Group B Group C Group D  Arm/Group Description: Treated with 2% Squaric Acid Dibutyl Ester (SADBE) on day 0 and with 2% SADBE on the visits at week 3, week 6, week 9, and month 8. Squaric Acid Dibutyl Ester: Repeat topical application of 2% and 0.5% squaric acid dibutyl ester (SADBE) in subjects with frequent herpes labialis (4 or more episodes in the previous 12 months). Treated with 2% Squaric Acid Dibutyl Ester (SADBE) on day 0 and with 0.5% SADBE on the visits at week 3, week 6, week 9, and month 8. Squaric Acid Dibutyl Ester: Repeat topical application of 2% and 0.5% squaric acid dibutyl ester (SADBE) in subjects with frequent herpes labialis (4 or more episodes in the previous 12 months). Treated with 2% Squaric Acid Dibutyl Ester (SADBE) on day 0, month 3, and month 6. Squaric Acid Dibutyl Ester: Repeat topical application of 2% and 0.5% squaric acid dibutyl ester (SADBE) in subjects with frequent herpes labialis (4 or more episodes in the previous 12 months). Treated with 2% Squaric Acid Dibutyl Ester (SADBE) on day 0 and month 6. Squaric Acid Dibutyl Ester: Repeat topical application of 2% and 0.5% squaric acid dibutyl ester (SADBE) in subjects with frequent herpes labialis (4 or more episodes in the previous 12 months). Overall Number of Participants Analyzed 10 10 10 10 Measure Type: Number Unit of Measure: events         Localized reaction (rash, erythema, itching/pruritus, warmth/burning) at application site 24 14 17 6 Generalized adverse events (related, possible or greater) 2 3 1 0 Generalized adverse event (unrelated) 4 7 6 4  
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