- This topic has 25 replies, 2 voices, and was last updated 8 years, 2 months ago by .
-
Posts
-
-
Hi Terri,
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.
-
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?
Terri
-
-
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.
Terri
-
-
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.
Terri
-
-
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.
Terri
-
-
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.
Terri
-
-
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.
Terri
-
-
Can you please renew your subscription? I would be happy to answer your questions but you have exhausted your six questions.
Terri
-
-
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.
Terri
-
-
well I can’t tell you whether it is an outbreak or not, no. But frequently bumps on the buttocks are folliculitis, yes.
Terri
-
-
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.
Terri
-
-
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.
Terri
-
-
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?
Terri
-
-
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.
Terri
-
You must register to ask your own question or be logged in to reply to this question.