› Forums › Herpes Questions › Constant tingling
- This topic has 25 replies, 2 voices, and was last updated 8 years, 2 months ago by Terri Warren.
January 6, 2015 at 9:20 am #2670
I was diagnosed with GHSV 2 around four years ago via a swab. For the first two years or so everything seemed pretty textbook as far as symptoms went. I had a terrible first outbreak, but then went on Valtrex and barely had symptoms at all besides the odd twitch and maybe one or two spots a year that went away in a couple of days. During this time I was also dating someone. We used condoms and I was on valtrex, everything was fine.
However, around a year and a half ago I began having constant tingling symptoms. They are intermittent but fairly consistent throughout the day. These symptoms either feel like a tingle or pins and needles, sometimes even muscle spasms (in my legs). I feel like these feelings are fairly localized to my genital region but also travel down my legs. Lately my legs have been aching and so has my foot. It’s worse at night. These symptoms occur every single day and have taken a huge toll on me. This ruined my sex life with my partner as I wasn’t able to tell whether the virus is active or not active, and that relationship ended up deteriorating at the end of last year.
During this time I have been to countless GPs and also been referred to a neurologist who did an MRI of my pelvis and found nothing. I have tried lyrica which didn’t help. I have tried famvir. I have tried raising my dose of valtrex to as high as 2000mg all which didn’t help. I have tried every supplement under the sun. I am at a loss. I have had blood work done numerous times b12 levels checked etc. I have no signs of a yeast infection that I can see but I was tested last week anyway just to make sure- I am drawing at straws here.
Up until Xmas I was pretty sure this was something nerve related even though the neurologist said he couldn’t help me; then I had two small outbreaks within four weeks, however each only lasted about 2 days. Through all of this the same tingling symptoms persist.
My mental health has taken a serious turn for the worst. A couple of months ago I met someone new who I really like- however I can’t disclose. The reason for this is because I don’t know what these tingling feelings mean. Do they mean the virus is active every single day? How can I possibly protect my partner from getting this if I am constantly contagious? I am at a complete loss for what to do and feel like I will never have a normal life or relationship again.
- This topic was modified 8 years, 2 months ago by Anon1234.
January 6, 2015 at 6:29 pm #2676
Hmmmmm. Sounds like an extremely difficult situation. I don’t have any magic answers. The only thing I can suggest right now would be to do some pooled daily home swabbing to see if you are actually shedding virus. Right now, you really don’t know, right? Is this something you could discuss with your OB?
I think if you found that you were NOT shedding (and you should do swabbing on drug, not off), then I think you could relax a bit, is that correct?
January 7, 2015 at 8:27 am #2700
That’s correct. I didn’t even know that was a possibility. How do I go about that? I need a referral for an OB? Is it possible to test for shedding at home in any way? I wouldn’t care how much it costs. You mean I should check for shedding while I’m taking valtrex?
If I am not shedding the virus would I assume this is nerve damage? And if I am found to be shedding everyday now do I stop this?
Thank you very much I appreciate it.
January 7, 2015 at 7:04 pm #2711
You can ask your local health care provider if they would work with you on this. If they would like to consult with us about how to do this, we would be happy to talk with them at no charge about how to do this.
If not, we can send you swabs to gather at home. Yes, while on medicine. If you want to do that, you will need to set up a phone consultation to go over all the details about how to do and the shipping, etc.
If you are not shedding virus, I think the tingling is likely due to something else. Herpes simplex doesn’t really cause permanent nerve damage.
Lets not worry about you shedding everyday and what to do about it until we know something more certainly.
January 8, 2015 at 1:51 pm #2751
I will ask at the sexual health clinic. I think is the most likely place?
I would be happy to do the swabbing at home, however, I am in Australia so that would make shipping and everything much more difficult. What is the best number to call should they need guidance? And the best time considering time differences? I appreciate that but am happy to pay for any costs involved. I will pay the fee to continue this conversation as well when I need to reply again.
January 8, 2015 at 4:50 pm #2755
Yes, that might work, the sexual health clinic. I sort of doubt it will work but do ask!
We ship swabs all over the world. I’m not sure about the time change differences. How about if you ask first and if they want to talk with us, then we can try to set something up. Otherwise, shipping works well. These samples are very stable as they are gene amplification tests, not cultures that are trying to grow anything.
Yes, we have used all our questions now.
January 11, 2015 at 4:19 am #2830
My appointment with the clinic isn’t until the 19th and I would really
like to get things moving. For some reason I also doubt that they will know anything about this swabbing- there seems to be a real lack of knowledge surrounding this virus. How do I go about getting these samples sent out ASAP and what are the costs involved? By gene amplification test do you
mean that they give an instant result? Can I read them on my
own or do I need to send them back for analysis?
Also- not sure if I should save this for my next question- but I’m really anxious about it. I’m fairly sure I had an outbreak on my buttocks a few days ago. I was making out with the guy I have been seeing and he slid his hands down my jeans.
I think his hand might have come into contact with one of the spots slightly for a second and we were kind of sweaty because it was really
hot. He doesn’t know about my HSV 2 status because we’ve only been dating around a month and obviously I feel I can’t tell him with this situation I have going on. Honestly I’m probably going to break it off with him soon if i can’t figure
out this tingling situation. I just can’t bear the thought of telling him knowing I can’t protect him if he did want to persue a relationship with me.
Anyway- my question is, is it possible that he could get it on his fingers from coming into contact with the outbreak? If he touched if then touched somewhere in his boxer short region could he get it that way?
January 11, 2015 at 8:54 pm #2843
The cost of each swab is $75. Some people combine several swabs into one vial, which is fine. Others use only one swab per vial. Either works. As for the cost of shipping, you would need to call Roger Smith in my office who sends out the swabs. He would need to research the cost based on your exact address. When you say sexual health clinic, I’m thinking that you don’t live in the US. Gene amplified testing just means that instead of a culture, where something grows in media and then can be identified, gene amplified testing looks for small pieces of the genetic material of the virus which is much more stable way to view the virus and much more sensitive – less virus is needed to call the sample positive. It is NOT something you yourself can read, no.
I’m not at all worried about your partner getting herpes virus on his hand, no. Hand skin is thick and virus cannot penetrate easily.
January 12, 2015 at 4:53 am #2862
Okay. Would I just call the number on the front of this web page? I don’t quite understand the differentiation between one swan per vial or several swabs per vial….
How many swabs would you recommend I do in order to get an accurate picture of what’s going on? How long will it take to get the results once the swabs are shipped back?
- This reply was modified 8 years, 2 months ago by Anon1234.
January 12, 2015 at 9:59 pm #2867
If you want to know specifically if a particular day’s symptom is herpes, you would use separate vials for each swab. If you want to know in general, say during a whole week, if you shed virus during that week, then you could combine 7 swab tips into one vial and if it was positive, which takes about a week to know, then you would know that you shed at least once in a week.
January 13, 2015 at 12:49 pm #2899
I went to my gp today and tried to explain the situation. She is a new gp as I don’t really have a regular one. She seems willing to try and help me find out what is going on. I explained about the swabbing and she took a swab on the spot. I’m hoping it’s the right sort. She said this swab will look for the DNA of the virus and doesn’t try to grow anything which sounds like the same thing you are talking about?
Hm. As for the swabs and the vials- it seems to me like it wouldn’t be of much use to swab over an entire week- because if I am shedding it could have been on any of the days? How often does someone on valtrex usually shed the virus? If I get this swab back and the results indicate no viral shedding would you say that means the tingling doesn’t necessarily indicate that I am shedding everyday?
If the swab comes up positive I’m not sure where to go from there- because it could just mean I was shedding on that particular day, if you know what I mean. I would probably have to do more swabs to find out if the tingling is a prodomal symptom that I am experiencing daily. Do you understand what I mean? So complicated 🙁
Can I also ask- because I keep hearing such conflicting information- how much bearing does diet have on this virus? Do things like alcohol, chocolate, artifocial sweeteners, coffee and sugar all trigger hsv? And do supplements have any benefit?
January 13, 2015 at 4:14 pm #2923
A person who collects seven swabs in one vial is looking for ANY shedding. No, it cannot tell you how many days out of seven they are shedding, only that they shed at some point during that week. In your case, you could try that and see if during a week you are shedding virus at all. If the swab is negative, then, within the limits of the swab test, no virus was found. If the swab comes up positive, then you were shedding virus.
We not not aware of any research that confirms that any of those things is a trigger for herpes, and I am also not aware of any supplement that is known to reduce shedding or outbreaks in a significant statistical way including Lysine.
And yes, the swab she collected is PCR.
January 15, 2015 at 1:41 am #2974
I got the result back from the single swab my doctor did. She said is was a “molecular amplification test” or something. She said that it found no evidence of the virus shedding. This swab was done on a normal day where I had the tingling as normal.
In your opinion, do you think this means the tingling is not a prodromal
Symptom and is unrelated? Would you say it is safe to have sex with all the precautions?
Psychologically I think I will struggle because of the way the tingling makes me feel. In my head I view it as meaning I am contagious. I know that after we sleep together (if the talk goes well) I have will have anxiety about it every day wondering whether he will get it. I still freak out when our skin touches lying in bed together even though I am aware it is irrational.
A question about valtrex- if am taking two doses a day, I am aware that it is best to take them 12 hours apart. If one day I took them 13 or 15 hours apart would this greatly reduce it’s effectiveness?
Thanks for your patience in answerig all of these questions, I appreciate it.
- This reply was modified 8 years, 2 months ago by Anon1234.
January 15, 2015 at 2:49 am #2977
Can you please renew your subscription? I would be happy to answer your questions but you have exhausted your six questions.
January 15, 2015 at 2:46 pm #2979
Sorry I didn’t realize. Silly me! I renewed it. Thanks!
January 16, 2015 at 4:58 am #2995
This is great news. It suggests that the tingling you are having is not related to herpes. I think it would be OK to have sex with all the precautions but you know that nothing is perfect, right? I think the thing is you’ve done everything you can.
It is good to take the meds about 12 hours apart but it does not have to be exact, no. This medicine is approved for once a day so twice a day is even better and especially if taken regularly.
January 24, 2015 at 2:03 am #3218
Ive told my partner but we haven’t had sex yet. I am still too worried about things.
We masturbated one another and there was a bit of rubbing up against each other with our underwear on the other night- the next
morning when I woke up I noticed a few small red bumps on my buttocks. I have no idea whether this is an outbreak or a pimple- to me they kind of look like folliculitus. There is only one really obvious one. Of course now I am terrified. How can I tell whether this is an outbreak or not? Usually the lesions appear on either my perineal area or anus.
January 24, 2015 at 2:04 am #3219
well I can’t tell you whether it is an outbreak or not, no. But frequently bumps on the buttocks are folliculitis, yes.
January 24, 2015 at 1:18 pm #3222
In your opinion how likely is it that if this was an outbreak, I could have transferred it to my partner without having sex/or without any immediate contact with the questionable lesions? For example through shedding on the boxer shorts area while our generals were touching/rubbing through our underwear?
I hope I don’t mind I attached a picture to ask your opinion on what it looks like because I’m freaking out. I don’t know how I’m supposed to protect
my partner from gettkng HSV with all these confusing symptoms? I’m such an anxious mess all of the time. If I had know those spots were there I wouldn’t have even have gone that far. They were then when I woke up in the morning 🙁
January 24, 2015 at 6:41 pm #3228
I’m so sorry but you are once again out of questions for your subscription. You have purchased 9 questions total. This is not my favorite part of this job, reminding people but if I don’t, it isn’t fair to others.
January 25, 2015 at 1:14 am #3250
Sorry. I must have counted wrong. All fixed. Thanks again.
January 25, 2015 at 6:19 pm #3254
These to me seem like little pimples, not herpes lesions of the buttocks. I can’t be certain of course from picture, but I have seen lots of buttocks herpes and it does not look like this. The thing to remember is that if you have genital herpes you can transmit even if you have no symptoms at all. It is good that you are trying to determine what is a lesion and what isn’t so you can clearly avoid sex when you have obvious outbreak symptoms, that’s one time you can know for certain that you are likely shedding virus.
Remember that you cannot transmit virus through underwear. Remember also that places like your buttocks and thighs and abdomen in the boxer shorts area are not shedding – the skin is too thick there. Virus can’t get out unless there is an outbreak where skin is disrupted; it is only shed from the genitals where the skin is thin.
I am not concerned about these particular pimple like lesions.
January 30, 2015 at 12:59 pm #3350
Hope you are keeping well.
Thanks for your last response. I am very well aware that nothing is 100%. It is still very hard for me with these tingling feelings. I went to a sexual health clinic yesterday on the advice of a nurse at my local hospital. The nurse was great, but the doctor was terrible. He told me not to bother with suppressive therapy because my partner would end up catching the virus anyway long term. He advised me to go off the medication. I tried to explain to him about the swab I had done, and at that point he told me the swab result was irrelevant because according to him, it isn’t possible to test for the virus unless there is a lesion present. It very much feels like my life is consumed with thinking about, reading about and worrying about this virus. I barely have time for things I enjoy.
I still haven’t slept with my new partner. The other night he gave me oral sex (which i had trouble enjoying because I was worried about herpes) and there was some genital to genital contact for about 30 seconds before I realized he was getting carried away and stopped it. About 10 mins later I gave him oral sex. I’m
Worried that the small amount of contact was enough to transfer virus and that the moisture/friction from the oral sex afterwards could have increased the risk. Assuming this tingling is not the virus constantly shedding- I know that I may well be worrying about nothing. But I can’t stop with the what if’s. I definitely think that my partner has thought about this now and is ready to sleep with me, but I am so anxious about it that I doubt i’d be able to enjoy it- let alone survive the 10 day wait afterwards to see if he gets it.
It seems crazy that while on 1500mg of valtrex I could be having daily prodromal symptoms, I have also noted that many others on the support forums experience these symptoms. Someone has suggested cutting out all sugar but I really just don’t see that making a difference? If this tingling, as the swab suggested, is not due to herpes what could it be?! I feel crazy worrying about this all the time. Thanks once again for your time,
it is invaluable to be able to speak with someone who understands this virus.
January 30, 2015 at 1:09 pm #3353
I am surprised that your doctor does not read the prestigious New England Journal of Medicine where Dr. Lawrence Corey published the paper (and I am also an author) showing that daily antiviral therapy reduces the transmission of herpes by almost 50%. Perhaps you should print out a copy and send it to him. It was published in the January 2004 edition, I believe. Such an effective tool for reducing transmission yet he discourages it. I’m really shocked.
I think you may be looking at this incorrectly. You want to know that your shedding is very very minimized or gone and that you aren’t really having prodrome. I think a shift in your thinking at this point would be most helpful. I would encourage you to think this way: We know that herpes can be transmitted when there are no symptoms whatsoever, not even prodrome. So there is a chance you could infect this person. But this person knows about the herpes and is willing to take the chance of infection. So your task now is to live with his decision. You have done absolutely everything you can. You are heavily invested in controlling your herpes situation. But the reality is that you can’t control everything about this situation, no matter how hard your try. Nor, do I think, that you should try to control his life. I assume he is a grown up. Let him make his own informed decisions! If he gets infected, he does. Period. His choice. You have nothing to feel guilty about.
Also, I am assuming that he has been tested?
- This reply was modified 8 years, 2 months ago by Terri Warren.
January 30, 2015 at 1:50 pm #3354
That is one of only many doctors who are ignorant to the point of disbelief. I have been told on several
occassions that disclosure is not necessary. The last gp I visited was not aware that you could transmit the virus without active lesions. Given, she was willing to listen to what I had to say and did some research but that’s not the point.
The doctor yesterday was by far the worst,
though. I just assumed that working at a
Sexual health clinic he would have some clue. I guess not. I’ve been shocked time and time again at the level
Of ignorance. Everything I have learned about this virus has come from the internet.
I know that I need to find a way to come to terms with the psychological aspect of things-
I suppose what I am struggling with is believing that the tingling isn’t herpes. If I could be certain then I could accept the small
Risk that he might get it- but if the tingling is herpes then I am putting him at high risk every single time we have a sexual encounter and that is just not acceptable to me. I just don’t know if I could live with myself.
I was wondering if there could be something wrong with my immune system without me knowing about it. I have had all
The usual tests done- iron, b12 etc. Is there a specific test that could tell me if
my immune system is low?
He hasn’t been tested to my knowledge. I know I should ask him to be tested but I don’t want to gamble on the chance that he might already have it. It would seem unlikely as he has obviously never had any symptoms. I also don’t want to risk making him feel uncomfortable/ make a big deal about things since he was already a little bit freaked out after I told him. I think he is also a person who worries a lot. So obviously I am keeping all these worries to myself.
I will renew my subscription now in case I have run out of questions.
January 31, 2015 at 5:08 pm #3373
You could do some more swabbing when you have symptoms or you could consider doing some daily home swabbing to sort out your shedding rates. It isn’t cheap but if you have health insurance, you might be able to use that.
Yes, I find the lack of knowledge among health care providers about herpes to be quite astonishing.
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