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6 outbreaks since January


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@CHT I spoke to Wilson as I already created another thread to help interpret my results.. he said he believes this result does not indicate a positive for HSV2 but does not completely rule it out.. he said from the results it is likely some cross contamination.  Apparently this is seen very often in people with high HSV1 results and low positive HSV2 (also confirmed on google and by Terri ) he said I should assume I have HSV1 caught genitally  from oral sex.  
 

i thought the same as you that maybe cos I’ve had it so long the anti bodies would be low but this doesn’t support the theory as to why my  HSV1 results are  so high if this is from childhood  I would have had it way longer than HSV2 so if this theory was true you’d expect lower results for HSV1  . Wilson also said how long you have had it doesn’t have  any effect on how high or Low the anti bodies are.   
 

I defo think I have HSV Genitally no doubt about it but I’ve always though  it was HSV2 and now I think It may  be HSV1 caught from oral sex. I’d rather none but I know HSV1 sheds less and is meant to be less active  ( maybe that explains why it was basically dormant after my first OB for years) doesn’t explain why it’s active now though. 
 

Wilson thinks my swab wasnt typed by the clinic and as it was on my genitals it was just assumed to be HSV2, I can’t remember if they tested wether it was 1 or2 but I am sure I was  told it was type 2. 
 

From  what I have read my result for  type 2 is at the mid  end of the low positive  range which goes up to 3.5, according to the expert Terri from Westover  heights a high percentage of people within this bracket are false positives as confirmed by a western blot. I don’t even know if you can get a western blot in the U.K. I would have to google it. 
 

to be honest  I don’t know the experience in the US but HSV is just dismissed here health professionals don’t  seems to take it serious they don’t even tell you to disclose and say  it’s up to you.  I think even talking to them about my results wouldn’t get me very far. 
 

i now know why they don’t recommend blood testing for HSV it’s very  confusing and now left me wondering if I have type 1 or 2 or both.  I’ve never even experienced what I could even have mistaken for a cold sore I’ve had no issues there what  so ever. 
 

so say it is oral HSV1 aswell... do I now need to worry about passing on via oral about kissing ?? Or do I go on as normal ? 

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Looks like WilsoInAus gave you good information.... I didn't realize he had already provided input..... I have to agree with him that there is a good chance your OBs are not necessarily HSV2.... may actually be HSV1 or something all together not HSV-related.... If I were in your position, I'd still want to know positively whether it was HSV2 or HSV1 (or rule both out completely)..... I agree that a lot of medical professionals don't take any of this HSV stuff seriously.... it's somewhat the same here in US as in UK.... however, if you have the time and desire, I would get the opinion of an expert in STDs.... for me, I got a referral from my general doctor to an infectious disease doctor....he was outstanding and took things very seriously and did his best to confirm whether or not I had acyclovir-resistant HSV.... the amount of work/effort we both put in to trying to solve the mystery and stop the outbreaks was very encouraging.... but that's another story.   What I'm suggesting is that you might want to consider finding an infectious diseases specialist, particularly if they have expertise in STDs (Herpes specifically if at all possible).... do you live in or near a large city with options for finding these types of specialists?

I would not worry about passing along the HSV1 orally since it never gives you any trouble.... again, after you've been intimate with someone no one has claimed to all of sudden claim they have cold sores, correct?  It's still possible your OBs are actually HSV1 which is why you had so little trouble previously.... why you're having trouble now is a question that needs to be answered..... it would be helpful to get a swab test as soon as you have an OB.... that will solve the mystery but, as we discussed, it's hard to get in at just the right time to meet this "window."  I would treat it as if it's HSV1 for now until you confirm it..... but again, I don't think you have anything to worry about in the oral interaction situation.....

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@CHT I definitely think they are HSV related but I think maybe there are HSV1 genitally. But doesn’t explain why I was told at the clinic the swab was 2. I can only remember ever being swabbed once but I have had it for 13 years so I could have forgotten but I know I wasn’t swabbed during my initial OB that’s for sure. 
 

 Unless when swabbed  just didn’t type it and assumed I really can’t remember but even way  yeah I agree I need to get it typed again when I get an OB. Will be difficult even if I can get to a  clinic cos the OBS I get are so mild they don’t  really even have any liquid coming out and I read that is what they have to test and if there is just a dry spot it can’t be tested  ? I guess at my next appointment I can ask if it was typed but even if they say yes I still want to look in to this more.  

I live in London so finding experts etc is relatively easy as a lot of private clinics here. I would have to pay and go private as my GP wouldn't refer  me for this. I don’t see them for HSV issues either I see the sexual health clinic who can’t make those  referrals.  I did pay and see a dermatologist who specialised in vaginal skin conditions and herpes and warts etc she was useless she told me my excema  was really bad and she said all my issues are related  to that and not my HSV and just prescribed more steroids. That visit  cost  me £250. 

I am going to consider seeing a infectious disease specialist. What did they  advise you on how  to stop outbreaks ? Did they  mention anything about leg pain?  What kinda tests did they run if any? 

no nobody has ever said they have caught any thing from  me to  my knowledge coldsore or GHSV.  It’s strange to think that for years I’ve thought this was HSV2 and now it may actually be 1. 

 

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The infectious disease specialist, who was very keyed into STDs, including herpes, tried to get a good swab test multiple times and have it analyzed for acyclovir-resistance.... only a few labs in US can do this so, it was expensive  (thank goodness I have decent insurance) but, it came back "inconclusive" because we missed that window!  He also prescribed imiquimod which did not help me (has your doctor/specialist mentioned this one?).  He also prescribed an ointment that I can't remember the name of (I'm not home this weekend to look back at my medicine cabinet).... it also did not work.  But, as I mentioned before, Zovirax (acyclovir ointment) does seem to help.... have you tried that one?

For whatever it's worth, I still feel your problems are not HSV2 related.... which of course is great news.....it may be HSV1 but, to be fully honest, my non-medical opinion is that this may not be the problem right now either..... so hard to say for sure without a positive swab test during an outbreak to confirm.... if the OBs are minor, no fluids, that's also a good sign and may indicate something other than HSV altogether... Oh, you mentioned "more steroids".... are they ointments/creams or oral tablets?  Again, I have to warn you steroids can definitely trigger OBs.... are you on steroids now?  Do the OBs clear up when you stop the steroids?  

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@CHT I have looked up infectious disease specialists and all I can find In the U.K. are ones who specialise in tropical diseases.  I have found a consultant gyno who specialises in STDS including HSV and warts HIV  etc but then again I see a consultant for free at the sexual health  clinic so I’m not sure if it’s even worth paying to see this lady.  
 

imiquimod I have never heard of that ? Is it a cream  tablet etc? Can I ask how long you have had HSV for ? Are you still suffering with OBs now ? And how regular are they ? Are they mild like mine or quite bad? I have tried Zovirax not on an OB but when I felt a tingle and nothing ever came to a blister.. it does say you shouldn’t use  it on your genitals on the tube though ?

my OBs are strange I rarely rarely ever get the tingle ppl describe, Most of the time it just appears and then the leg pain starts so I know it’s a OB.  The leg pain I get with an OB is different to the leg pain I feel I experience daily. It’s so strange this leg pain daily cannot be associated to HSV cos I have been told you don’t have constant  leg pain. But if not then what is it ?! 
 

I remember when I went to the emergency doctors with my first ever OB and she said i had it anally as well but I’d never even had anal sex I was only 18 I’ve also never experienced another anal outbreak since then.  Would the first OB just spread across the entire genital area including  anally ? 
 

They  are ointments which I am told don’t lower your immune system like tablets  do so wouldn't effect my OBs l. I rarely even use the ointment and I still get OBs even when I don’t so I don’t think they are related. 

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If you think you are getting the proper treatment/investigating from the sexual health clinic, then it might not be worth going to the gyno specialist but, it just depends on whether you want to spend the time/expense to see if someone other then the sexual health clinic specialists can pinpoint what you are dealing with.

Imiquimod is an ointment.... apparently it works on some people early in an OB.... it did not work for me.  I typically get relatively minor OBs now (they were much worse two years ago).... I went through a 7 month period late last year without any OBs but for some reason this year, I've had an OB about every 4 weeks on average....typically, extra Valtrex (1000 mg/twice daily) plus zovirax tends to get the situation under control in about 2 to 3 days.  My doctor told me to apply the zovirax directly on the lesion.... no warning about using on genitals. 

Getting OBs in anal area is common when you have genital HSV..... the damned virus can move back and forth from "front to back" at times but, tends to like one area more than the other depending on where your initial "entry" point was for the virus..... remember, all it takes is someone who is shedding the virus to make contact with your skin (including anal) to pass on the virus..... it doesn't necessarily require full anal sex to pass the virus along.  When you went to emerg. room did they tell you they saw lesions in your anal area?  Were they swabbed? 

Are you trying any herbal/vitamin supplements to help with overall health and OBs?  I have a number of things I've tried .... I'm big on experimenting with supplements..... especially if there is some scientific proof (even if it's a bit weak) showing it can help with HSV......  

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@CHT have just been told the consultation fee alone is £275 so I’m not sure if it’s even worth going. 
 

ohh okay I have never never heard of that ointment I will have to look it up. I was relatively OB free last year apart from maybe 3  minor ones and I wasn’t on suppression for most of that year as I do have breaks from it. This year has for sure been the worst year I’ve had I remember in February i had one two weeks after another. 
 

the emergency room did say they say lesions anally but nothing was ever swabbed that day, I wasn’t swabbed till 7 years or more after attending the emergency room  when I started getting a lot  of OBs. HSV honestly never bothered me at all for 7 years I practically forgot I even had it. 
 

I have tried lysine and olive leaf  but I am quite bad when it comes to taking supplements I forget so I probably haven’t ever tried it long enough to take effect. Anything you recommend?   
 

I have thought about getting  another blood test but all health professionals seem to advise against  them.. I think the best way is to swab a lesion when it appears. You can order a kit here to do it yourself and send off in the post. I think I will order the kit to have it at home for when an OB occurs so I can swab it straight away rather than going to the clinic  

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Yes, I've heard now you can do the "at home test kits" ..... my doctor mentioned the same thing and I've thought about ordering one and checking on my status just out of curiosity.  I think the same option is available for checking on acyclovir-resistance.

As for supplements that I think are of help (I can't say with certainty since I tend to take multiple supplements and it's tough to say which ones are working and which ones are not unless I start experimenting by removing one at a time and wait and see what happens and even then, it's not sure thing)...... I did find that shortly after taking iron supplements (iron sulfate) things got better....  also, noted that Olive Leaf extract helped.... also, ginger root tablets, berberine, garlic, krill oil tablets, vitamin D3, and echinacea.  Have you had your iron levels checked?  Before taking iron you may want to make sure this is okay.... if you google "iron" and "herpes" or "HSV2" you will find a couple of interesting articles/studies linking iron supplementation and reduction in HSV outbreaks.... I think I also mentioned I take it easy on caffeine and alcohol since they can be triggers for me.  I've also heard CBD oil may be of some help but, I just started that one and can't tell yet if it's making any difference (although no OBs yet since I started about 10 days ago).  

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@CHT I think I am going to order one as I want to know if it is 1 or 2 . I don’t think in the U.K. you can check for resistance though. 
 

I have had quite a few blood tests done by my GP over the years and I think iron was something that was checked and was all fine. I did  have low vitamin D levels though not sure if this has any connection ? I will look into the supplements just find it hard to keep up with  taking them all. Do you think they actually help ? 
 

I don’t  drink much caffeine, I drink decaf tea and I don’t drink any coffee, I do drink Coke Zero though daily unfortunately is an addiction of mine but i have heard there is minimal caffeine in there.  Alcohol is another story I do enjoy a glass of wine several times a week I try and stick to weekends though.  I don’t think there is a connection though  as I have been on strict diets in the past and not touched alcohol in months and I’ve still had OBS
 

For some  reason this is really Getting me down at the moment it’s on my mind constantly even when I’m not having any symptoms I feel I am looking out and waiting for them.. I am checking myself down there several times a day even normal bumps or spots that I know aren’t OBs I am examining and waiting for them to turn into one.
 

The leg pain is in a different leg each day I wake  up  and  I am constantly focusing on it it seems to come and go throughout the day but an OB doesn’t follow , this doesn’t fit with the typical Prodome symptoms so I really don’t know what it is. Do you get nerve  pain? 

 

 

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On 5/27/2021 at 4:51 PM, Lucy29 said:

@CHT I think I am going to order one as I want to know if it is 1 or 2 . I don’t think in the U.K. you can check for resistance though. 
 

I have had quite a few blood tests done by my GP over the years and I think iron was something that was checked and was all fine. I did  have low vitamin D levels though not sure if this has any connection ? I will look into the supplements just find it hard to keep up with  taking them all. Do you think they actually help ? 
 

I don’t  drink much caffeine, I drink decaf tea and I don’t drink any coffee, I do drink Coke Zero though daily unfortunately is an addiction of mine but i have heard there is minimal caffeine in there.  Alcohol is another story I do enjoy a glass of wine several times a week I try and stick to weekends though.  I don’t think there is a connection though  as I have been on strict diets in the past and not touched alcohol in months and I’ve still had OBS
 

For some  reason this is really Getting me down at the moment it’s on my mind constantly even when I’m not having any symptoms I feel I am looking out and waiting for them.. I am checking myself down there several times a day even normal bumps or spots that I know aren’t OBs I am examining and waiting for them to turn into one.
 

The leg pain is in a different leg each day I wake  up  and  I am constantly focusing on it it seems to come and go throughout the day but an OB doesn’t follow , this doesn’t fit with the typical Prodome symptoms so I really don’t know what it is. Do you get nerve  pain? 

 

 

Hi Lucy..... sorry you're feeling down over this issue.... I know exactly how you feel.  It's easy to obsess over having this damned virus.... I sometimes do the same thing the minute I think I feel something.... then I check the situation and pray nothing is starting up!  I'm learning to do less "checking" since this only makes me more stressed......the constant worrying and "checking" of course just adds to the stress that we are supposed to try to avoid because, of course, stress increases the odds of another outbreak... it's a vicious cycle!  If it's bothering you to the point that it is interfering with your normal daily functioning, then it may be worth looking into new ways to help resolve the obsession.... everything from therapy to yoga to anti-anxiety medications.... or whatever works best for you to bring your stress levels down.

Sounds like your caffeine intake is nothing too over the top...... but, just FYI, Coke Zero has as much caffeine as regular coke (at least it does here in US).  I stick to caffeine free teas (green tea, ginger tea).

I can't say with certainty that my supplement list is fully effective but, I'm pretty sure it's helping.... I think vitamin D3 is a really good supplement, particularly for people living in far northern areas (that would include the UK).... all sorts of medical studies show it provides great immune support and that's important for those of us with HSV.... I also think the iron supplement makes a difference too..... The rest of my supplement routine involves mostly anti-inflammatories (ginger, turmeric, garlic, olive leaf extract)..... lots of studies show that supplements that lower inflammatory responses tend to be good for those of us with HSV.  I make a habit of taking these daily and so I don't forget, I take them at same time each day.  

As for nerve pain, I don't really get anything serious.... just more of a slight ache in my left leg that sometimes goes all the way down to my heel.  It literally varies day to day.... I'm at a point where I'm not really sure it's related to prodrome since I often get the "ache" and still no outbreak.  Is yours a serious pain?  enough to cause you to have to take pain meds?  BTW, do you take any allergy meds?  I found that these definitely triggered outbreaks.... especially if I were to take sudafed!  

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@CHT Hey.. it’s so strange cos i obsessed and thought about this hardly at all for the first 7 years even after my diagnosis but maybe cos I was younger and I didn’t have any obs.  I would say I have been obsessively checking for the last few years now, I probably do it almost daily even sometimes if I’m not feeling anything. I know stress brings it on but I don’t really feel stressed but I guess deep down I am stressed and the checking etc is making things worse. I wouldn’t say it interferes but I would say I think about  it ALOT like even if I’m watching a movie or something.  
 

I have tried to cut the Coke Zero to see if it makes any  type of difference but it doesn’t.. I for sure think  mine were hormone related as they used to always come a week before or a week after my Period. Now that pattern seems to have changed though.  
 

Thanks for the recommendations I will look in to the supplements and see if it makes any difference... since I have been taking 1000mg of Valtrex  for the last week I think it’s been i haven’t had any itching really  so I hope this is a good sign. 
 

I am not sure if mine is related to prodome either as I get it ALOT and no OB. mine can sometimes be painful but not unbearable. It feels like electric shocks or sometimes a cold kinda feeling inside the leg it can go all the way  down to my foot, it’s in both legs but never both legs at the same time. mainly runs from the bottom  of my back down the back of my legs but can also sometimes move to the front of my legs and feet. sometimes it is a dull  ache as well. If I google saitica it literally meets all the symptoms of that but I have heard that is really painful and I wouldn’t say this is.  I have looked at seeing a pain specialist who deals with nerve pain  but unless I wait months for a GP referral it’s going to cost me £295.. so I can either see them or see the specialist gyno. 

the specialist at the sexual health clinic said she does see ppl with nerve pain but not constant and always related   to  OBS. She said if it’s constant and changes  throughout the day she doesn’t think it’s hsv related. 
 

I don’t take any anti allergies I don’t take anything other than the valtrex  

 

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3 hours ago, Lucy29 said:

@CHT Hey.. it’s so strange cos i obsessed and thought about this hardly at all for the first 7 years even after my diagnosis but maybe cos I was younger and I didn’t have any obs.  I would say I have been obsessively checking for the last few years now, I probably do it almost daily even sometimes if I’m not feeling anything. I know stress brings it on but I don’t really feel stressed but I guess deep down I am stressed and the checking etc is making things worse. I wouldn’t say it interferes but I would say I think about  it ALOT like even if I’m watching a movie or something.  
 

I have tried to cut the Coke Zero to see if it makes any  type of difference but it doesn’t.. I for sure think  mine were hormone related as they used to always come a week before or a week after my Period. Now that pattern seems to have changed though.  
 

Thanks for the recommendations I will look in to the supplements and see if it makes any difference... since I have been taking 1000mg of Valtrex  for the last week I think it’s been i haven’t had any itching really  so I hope this is a good sign. 
 

I am not sure if mine is related to prodome either as I get it ALOT and no OB. mine can sometimes be painful but not unbearable. It feels like electric shocks or sometimes a cold kinda feeling inside the leg it can go all the way  down to my foot, it’s in both legs but never both legs at the same time. mainly runs from the bottom  of my back down the back of my legs but can also sometimes move to the front of my legs and feet. sometimes it is a dull  ache as well. If I google saitica it literally meets all the symptoms of that but I have heard that is really painful and I wouldn’t say this is.  I have looked at seeing a pain specialist who deals with nerve pain  but unless I wait months for a GP referral it’s going to cost me £295.. so I can either see them or see the specialist gyno. 

the specialist at the sexual health clinic said she does see ppl with nerve pain but not constant and always related   to  OBS. She said if it’s constant and changes  throughout the day she doesn’t think it’s hsv related. 
 

I don’t take any anti allergies I don’t take anything other than the valtrex  

 

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 miserable.... it truly did affect my quality of life to the point I had to seek counselling.   Then I tried acyclovir then switched to valtrex.... it took a few months but, the outbreaks slowly started to stop to the point where, like you, for almost 7 years+ I had virtually no outbreaks at all.  My life was back and I no longer obsessed over it.  It all changed in early 2019 after I took high doses of prednisone (bronchitis issue)..... then it was back!  And much worse than ever before.  2019 was a miserable year for me.  Constant, severe outbreaks. I made multiple trips to see the infectious disease specialist and, as I've mentioned, we tried multiple new things, none worked.  I did switch to famvir instead of valtrex but, really not much difference there.  Things started to improve in 2020 and now 2021 is not all that bad either (with some moments of great disappointment when "it" reappears based on no known trigger).  As I said, after I accepted the fact that I may have developed an acyclovir-resistance (according to both the infectious disease specialist as well as my GP) so I realized the valtrex/famvir option may not be of much help anymore (although, my GP insisted I not stop famvir just in case it was still helping from making things worse) so I started to read up on supplements out there that have at least some small level of scientific support for helping reduce HSV2 activity.  That's how I've become a supplement-junkie.... I can't say with certainty they are what has helped in 2020/2021 but, things have improved.  It may also just be a case where my immune system has gotten better at handling the virus, as is the typical case with this virus..... things start out rough and then with each passing year, your immune system gets better at identifying and suppressing the virus..... but, unfortunately, the virus still knows how to hide out and make a come back from time-to-time.  

One thing I also have to mention in my "supplement regimen" is that I asked my doctor for a prescription for an anti-anxiety med and something to help me sleep..... they both have definitely given my brain some relief and I don't obsess as much as before.... and maybe it's a coincidence but, the OBs started to slow down shortly after I started the anti-anxiety med (along with the other supplements).  I don't want to take the med forever but my hope is we get some relief from new anti-viral drugs in the next year or two (Pritelivir is what I hope is a "functional cure" that comes out in 2022 or 2023) and then I can stop taking the anti-anxiety med.

As for your nerve pain, it does sound very sporadic which may not be related to the virus/prodrome.... the fact that it affects both legs is also unusual.... could be more related to sciatic nerve issues although my understanding is that those with sciatica have very severe pain and it is almost constant.  I don't know much about the connection of  OBs to having your period but, I have read other reports from others saying the same thing so, there's a possible relationship there I suppose.

You are likely thinking about it more than you probably should which then causes you to take every twinge very seriously.... same with the constant "checking down there."  Trust me, I am the same way.... I know that if I feel just the slightest twinge, I become obsessed about wanting to do my check..... and 99% of time, there's nothing to worry about.... but, this obsessing is stressful.... which is not helpful overall.  You may be more stressed about it than recognize since you've actually normalized this level of stress.  Are you able to still go out and have a good time with family/friends and do all the things in life that make you "happy."   In other words, are you able to put the obsessing over a possible OB aside most of the time so that it isn't affecting your quality of life?  

Finally, I'm glad the valtrex at 1000 mg/daily may be helping..... worked for me for many years!  I'd stick with that and see if perhaps this is just what you needed.  BTW, when I get an OB, I take two doses of 1000 mg valtrex daily (12 hours apart).... this may be another reason the OBs now are relatively minor and don't last much longer than a couple of days.  I'm not a doctor so, taking this extra dose is something you may want to talk to your doctor about.

 

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@CHT hey  I have had the weird burning and itchiness and redness the last two days it’s hard to explain the location but it is in the crease between my inner Labia and outer  and in the area that the specialist said is red and is from my excema have examined and examined with a torch lol! And cannot see a single cut in the skin or a sore or anything I get this a lot in this area and did even when on anti virals   before.. I’ve been told it’s my excema but I’m not to sure as I sometimes get leg pain with it but then I get leg pain anyways when nothing is there so I really don’t know what it is. either way I wouldn’t have sex with that feeling as I don’t know if it’s related to hsv or  not . I feel it is but if it is that means I get it a HELL of a lot. My specialist  said if my typical OBS are spot looking which they are then this is unlikely to be an outbreak as it doesn’t present the same.  
 

I decided to book  with the private specialist gyno next week as I just really want to get to the bottom of what is going on here and it’s getting me down . 
 

What kind of things did you infectious disease specialist  try ? Did they give any reason as to why it was dormant and now suddenly been active other than the meds you took ? Whenever I ask this question to all the specialists they don’t seem to be able to give me any type of answers. I wouldn’t obsess and worry over this half as much it I didn’t have constant symptoms. Even the anti virals  don’t stop the leg pain it’s a constant reminder and has been for years now. Why would leg pain suddenly start 13 years into this shit !! I never had leg pain before   anti virals when I had OBS every month with my period. 
 

I am able to enjoy myself with family and friends but it will be in the back of my mind at times.. or when I go home I will think about it. I for sure think about it daily no doubt about that .  
 

the leg pain seems to be getting worse and more painful as well, I stood up earlier and it really  hurt in my back and shot down my leg so I don’t know what this is if it even if related to HSV or not. I am thinking  to even go back on the birth  control i was on when I didn’t get OBS to see if that changes anything as I honestly  am willing to try anything now 

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Hi Lucy..... the more information you provide the more my opinion goes to the assumption you are not experiencing HSV-related symptoms (I envy you in that respect!).... that leg pain issue seems well beyond the "standard" prodrome for HSV.... have you or your doctor discussed sciatic issues?  Also, the fact that you get the itchiness and burning in your labia area without any sign of lesions is also not necessarily pointing to "herpes."  Apparently your health specialist thinks the same thing.... is it eczema??   Are treatments for eczema not working for you?  Has your doctor/specialist tried new options?  Apparently, genital eczema can be tough to treat and resolve.... here's an article that has more detail (apologies if you've already seen all this eczema information).... your symptoms sure sound like eczema (or possibly thrush):   https://eczema.org/information-and-advice/types-of-eczema/female-genital-eczema/   

Has the increase in the valacyclovir dose (1000 mg/daily) helped at all?  

I spoke with my doctor today and he decided to switch me back to valacylovir from famciclovir and see if that gets my recent outbreaks back under control .... 1000/mg daily.... I'm hopeful it works!  As for the previous recommendations of the infectious disease doctor I saw back in 2019, he suspected that the fact I went from almost no outbreaks for many years to numerous, and severe, outbreaks was likely related to the high dose prednisone I took, but, of course, he could not absolutely prove this.  He attempted to swab open sores and send off to specialized lab to determine if I had developed acyclovir-resistance..... that was "inconclusive."  We also tried imiquimod and it didn't work.... I asked him about option for Foscarnet but, it has to be done intravenously and he felt that was not worth going through plus it is hard on the kidneys.  

I sure hope the gyno specialist helps solve your situation.... I will be curious to find out if he/she rules out HSV quickly and is able to prove it via tests.            I'm curious, since the gyno specialist is "private" do you have to pay out-of-pocket for the visit?  Also, if you wanted to go to a non-private gynecologist, would the wait time be just too long?  How long would it take to get an appointment with an infectious disease specialist (with specialization in STDs)?  I'm not very familiar with UK health system.

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@CHT  hey .. I am pretty sure I do have HSV but I am not sure if the daily symptoms I am getting are related to it  as yeah they aren’t typical of prodomes etc and it is very rare to get HSV symptoms daily. My leg pain seems to switch legs  daily or even throughout the day

yes my specialist does think  the constant  symptoms are excema and not HSV. I am meant to use my steriod cream every night for 4 weeks and I haven’t been using it out of fear it may bring on an outbreak.. I will check out the link thanks. 
 

I did go to my doctor about sciatic pain and they gave me a sheet with some excersize to do to help but didn’t seem to do anything. 
 

increasing the dose  has kept the typical outbreaks I get away ( for now) I haven’t had any open sores  or blisters but it hasn’t done anything for the leg pain or this itchiness I get from time to time. 
 

I haven’t heard about any of the options your doctor discussed with you in the U.K. apart from the well known anti virals. It seems in the US you have access to better treatments and they are willing to do more investigations than here. hopefully you won’t get any outbreaks   now . How long ago since your last one? I don’t even know how long ago mine  was if we are going on what I defo knew was an outbreak then 19th April is the last time I saw an actual sore. But I’ve had the excema not sure what it is symptoms a few times since then. 

Yes I do have to pay for the gyno as it’s not through the NHS.. it’s going to cost me around £300 .. any tests they do would need to be paid for as well. You can get insurance if you use private health care a lot but I don’t have insurance 
 

The NHS would never refer me to anything like this as they would just say go to the sexual health clinic. They would only refer to a  gyno for non std related vaginal issues and it would likely take months. I waited 4 months for an appointment to deal with some other issues non HSV related. 

  Also I googled infectious disease specialists in the U.K. who specialise in STDS and none came up. Again the GP wouldn't refer for this. In the U.K. we don’t really go to our GP ( doctors) for STDS everything is done via  the sexual health clinic  and the treatment you get there is free as well I don’t pay for any of my anti virals, if I had to pay 6 months worth of acyclovir is about £60 which isn’t bad but valaclcior and famvir are crazy  expensive and are like £600.  If I was prescribed them through the GP I’d have to pay as you only get free meds in England if you are unemployed.  

 

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It's been about 3 weeks since I had an outbreak.... it was relatively minor and finished up in about 3 days (I always use Zovirax ointment and take extra valtrex during an outbreak).  I started back on the 1 gram/day valtrex yesterday so, fingers crossed it does it's job and I stay OB free for a long time!

I'm surprised that there are no infectious disease experts in your area with STD expertise but, perhaps they don't deal with STDs as they do here in US..... I guess your sexual health clinics are your best option or hopefully your gyno specialist will sort this all out for you and quickly.  

So, if I understand correctly, you're taking your valacyclovir daily (1 gram).... it doesn't cost anything under NHS system?  Very nice, indeed!  My 90 supply I picked up at the pharmacy yesterday (generic Valtrex) cost me $21 (about 15 pounds in UK equivalent).... so, it's pretty inexpensive and worth it as long as it works!  

 

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@CHT Hey does the 1 gram a day still seem to be working for you ? I’ve hardly had any leg pain for nearly a week now which makes me think it’s not related to the hsv as it doesn’t seem to be effected wether I take anti virals or not. 
 

I have the gyno specialist on Friday I wonder if she can help me to interpret  the blood results I’m still quite confused by them and wondering if it’s 1 or 2. I have thought about redoing them but I guess it’s just more stress than it’s worth either way i have one type of GSHV wether it’s 1 or 2 doesn’t matter I guess. Although I’ve read that some experts say you don’t need to disclose HSv1 as it doesn’t pass  as easily genital to genital and mainly passes via  oral tbh I don’t agree with that at all and don’t really think that’s fair. If you are told you should disclose 2 then I think the same should apply for 1.
 

it still really confuses me that so many ppl have cold sores and half of them don’t even know that it’s the herpes virus and none of them are ever told they should disclose even though they can pass it via  oral sex

 

yes that’s correct but only through sexual health clinic is it free. If I went via my GP I’d have to pay which is weird. Any meds  you get at the sexual health clinic you are given for free but not your doctor . I guess they give the meds free  to stop ppl spreading stds  As some ppl may not be able to afford meds.  Is that for a 3 month supply ? I’m given my supplies in 6 month doses 

If I am going by the last time i actually saw something I knew 100 percent was a OB then it’s been nearly two months since my last one which is the longest I’ve gone all year.  But like I said there’s been other sensations   without visible signs that  I’m not sure about I am hoping the specialist can shed some light on it  

 

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@CHThey thought I’d update you as I have just got back from the specialist. Feel like it was a complete waste of time tbh and was wayyy more expensive  than I thought . 

she didn’t care at all about HSV.. I told her about the blood results   she didn’t mention cross reactivity she told me it’s behaving like type 2 ( assume cos reoccurring ) so is type 2. but really the fact it didn’t reoccur for 7 years is typical of type 1 not 2 so confused about how she came to that conclusion.  She also said you can lose anti bodies over years which I haven’t read anywhere and I have done ALOT of googling. Also that doesn’t support  the case that  my hsv1 result is so high if it’s from a childhood infection… why haven’t I ‘lost’ tnem antibodies 🙁

She said as I haven’t had what I know for sure is a OB since I started 1 gram  of  val my hsv is suppressed and it would be very very rare to get OBS on that dose she said that I am as close  to zero ( never will fully be zero) as practically possible of transmitting whilst on this dose and having no visible sores.

she focused mainly on my excema she said it’s not excema and that it is sebboric ( not sure how to spell ) dermatitis she made me get NAKED and I mean fully not just bottom half  ! To check my skin everywhere. She doesn’t think the burning and redness is related to hsv and she thinks it is the dermatitis she also doesn’t believe the leg pain is HSV as an OB doesn’t follow so it isn’t a prodome she said there is no need to avoid sex when I get this pain . She said hsv nerve pain does not come and go daily.  She said it maybe a back/spine  problem that I should go to my doctor  about. 
 

She has given me a new treatment for the dermatitis so guess have to try that.. still feel like I’ve got nowhere as she’s only told me the same as what  the sexual health clinic has told me 

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Hey Lucy.... well, I guess getting much the same answer from the gyno specialist sort of puts the whole issue back into the category of "it's not likely HSV" you're dealing with down there..... and stick to the 1 gram of valacylovir (which I think is good advice).... did she pull any blood samples or did you bring the data you already have with you?  If I recall, your HSV2 antibodies level were very low, almost "borderline" thus giving more doubt that you may actually have HSV2.  Not sure why she would lean toward HSV2 and not HSV1 based solely on your IgG results.....

So she thinks you have seborrheic dermatitis down there?  I've never heard of that but, that means nothing.... hopefully with the new medication, that will be under control in a few weeks or couple of months..... then it will be interesting to see if you have any sign of problems in that zone.... particularly if you stay with the valacylovir.    BTW, the full nude body exam must have come as a surprise!  LOL.  But, she was being extremely thorough I suppose.... better than rushing you in/out.  

Oh, and to answer an earlier question, so far, it's been about 3 or 4 weeks back on 1 g/day of valacylovir.... and so far all clear!  It's not a record for me but, I am encouraged.  Also interesting to note that I've been dealing with a whopper of a stomach virus for last 5 days (fever, chills, aches, etc).... I thought for sure this would put too much pressure on my immune system and allow my HSV2 to reactivate but, fortunately, all clear, not even any prodrome.... but, I won't get too excited just yet, it can all change in a second!  

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      Hey Lucy.... well, I guess getting much the same answer from the gyno specialist sort of puts the whole issue back into the category of "it's not likely HSV" you're dealing with down there..... and stick to the 1 gram of valacylovir (which I think is good advice).... did she pull any blood samples or did you bring the data you already have with you?  If I recall, your HSV2 antibodies level were very low, almost "borderline" thus giving more doubt that you may actually have HSV2.  Not sure why she would lean toward HSV2 and not HSV1 based solely on your IgG results..... So she thinks you have seborrheic dermatitis down there?  I've never heard of that but, that means nothing.... hopefully with the new medication, that will be under control in a few weeks or couple of months..... then it will be interesting to see if you have any sign of problems in that zone.... particularly if you stay with the valacylovir.    BTW, the full nude body exam must have come as a surprise!  LOL.  But, she was being extremely thorough I suppose.... better than rushing you in/out.   Oh, and to answer an earlier question, so far, it's been about 3 or 4 weeks back on 1 g/day of valacylovir.... and so far all clear!  It's not a record for me but, I am encouraged.  Also interesting to note that I've been dealing with a whopper of a stomach virus for last 5 days (fever, chills, aches, etc).... I thought for sure this would put too much pressure on my immune system and allow my HSV2 to reactivate but, fortunately, all clear, not even any prodrome.... but, I won't get too excited just yet, it can all change in a second!  
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