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Endless twitching/hopelessness
Hi, so i had a sexual encounter 10 months ago where i performed oral on a male. 2 days later i had little painless sores on my tongue. got an IGG test for hsv1 and 2. i was negative for hsv 1 and positive for hsv2 with 2.21 which made me shocked because i have never had sexual intercourse in my 21 years of living ( i have only had received and performed oral sex and frontage). I got a PCR blood test which i found out was not a good way to test and came out positive for hsv2 with no score. Still did not believe these results so i got a Western blot as i became a patient of Terri Warren. My results came back both negative for HSV1 and 2. I was excited for a while but i still saw symptoms of constant muscle twitching all over my body - in my calves, arms, legs, hands, fingers, face and i still twitch till this day. I feel very hopeless because i don't know whether this is herpes related or it's anxiety and stress over this situation. Aside from the twitch the other symptom i keep on experiencing from time to time are these tiny sores on my tongue. It looks like inflamed papillae, and they sometimes last a day or less. Any suggestions on what i should do, who i should see, is it also possible that this could be herpes related??? Should i rule out herpes???
I also had a swab of the stuff on my tongue and it came out negative. Now I'm so confused. WHAT IS CAUSING MY BODY TO TWITCH INCESSANTLY? AND WHAT IS CAUSING THESE RECURRENT TONGUE INFLAMMATION?
Because of this i am beginning to doubt the accuracy of the western blot result. is it really accurate?
I also had a swab of the stuff on my tongue and it came out negative. Now I'm so confused. WHAT IS CAUSING MY BODY TO TWITCH INCESSANTLY? AND WHAT IS CAUSING THESE RECURRENT TONGUE INFLAMMATION?
Because of this i am beginning to doubt the accuracy of the western blot result. is it really accurate?
Hi I believe you. I’ve been going through the same thing for 7 months. I’ve been to ( doctors for my mouth and they all keep telling me it it’s dry mouth. Sorry but it’s not. I tried everything and it doesn’t change. I do have hsv 1 but I sometimes wonder even though my swab was pistive. I guess I just have to live with this terrible feeling in my mouth. I feel for you.
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What does Terri say? My guess is that she says you do not have herpes, and you can believe her - she is one of the best in the country, if not world, regarding herpes. I'd absolutely believe her if I was under her care.
You don't mention a time line - how long has it been since you had the exposure and when did start with these symptoms, etc? I ask not because it will change my answer - my answer will be whatever Terri says because she has examined you and knows your time frames and history, etc., but because that would help me answer whether or not I think it's anxiety. (I am not a doctor, by the way.)
Have you seen a therapist? A dentist or doctor about these mouth sores?
The thing about herpes is that it infects nerve groups. Genital herpes infects the sacral ganglia, which affects mostly the area covered by boxer shorts. Oral herpes infects the trigeminal ganglia, which is the mouth and nose area. You wouldn't be feeling tingling from either in your arms, hands, calves, etc.
Now could you have a pinched nerve or compressed disc or something? Sure, but that's something you'd need to talk to your doctor about, but that still wouldn't cause tingling ALL OVER like you describe.
Please do yourself a favor, listen to whatever it is that Terri said, because really, she is THE BEST. If it's possible it's anxiety, talk to your doctor about that and ask for a referral to a qualified therapist and perhaps medication (that's a decision to make with your doctor).
Believe the test, believe Terri. That's my best advice.
You don't mention a time line - how long has it been since you had the exposure and when did start with these symptoms, etc? I ask not because it will change my answer - my answer will be whatever Terri says because she has examined you and knows your time frames and history, etc., but because that would help me answer whether or not I think it's anxiety. (I am not a doctor, by the way.)
Have you seen a therapist? A dentist or doctor about these mouth sores?
The thing about herpes is that it infects nerve groups. Genital herpes infects the sacral ganglia, which affects mostly the area covered by boxer shorts. Oral herpes infects the trigeminal ganglia, which is the mouth and nose area. You wouldn't be feeling tingling from either in your arms, hands, calves, etc.
Now could you have a pinched nerve or compressed disc or something? Sure, but that's something you'd need to talk to your doctor about, but that still wouldn't cause tingling ALL OVER like you describe.
Please do yourself a favor, listen to whatever it is that Terri said, because really, she is THE BEST. If it's possible it's anxiety, talk to your doctor about that and ask for a referral to a qualified therapist and perhaps medication (that's a decision to make with your doctor).
Believe the test, believe Terri. That's my best advice.
11 Comments
The exposure was at the end of March this year. No i have not seen a dentist but i have seen a doctor about the tongue sore and they said its possibly irritation from spicy food or something minor. However when i then tell them about my low positive IGG 2 testing they then attribute it to HSV 2 possibly showing up on my tongue (weird).
The exposure was around the 30th of March to be specific, after giving oral sex. The next day someone else forcefully kissed me as well.
I developed symptoms 2 days after which were these little tiny painless sores on my tongue, it looked inflamed. I couldn't really see it till i looked up close in the mirror. Then it kept recurring every other week or so. I developed a mild fever, headache and general irritability after this exposure. I was very very very anxious that I had caught something. I saw a school nurse and she said it could not be HSV because i would know for sure if it was HSV and there would be lesions and burning in my mouth.
- I then got tested at an urgent care 5 days after this exposure. HSV1 negative, HSV2 positive with a score of 2.21 (SHOCKED as i've never had penetrative sex. I have given and received oral sex though)
THE TWITCHING started in JUNE, about 2 months after i had the first IGG test which came back positive and also after i had finished taking the dosage of acyclovir that was prescribed to me.
The twitching first started in just my calves, then my nose, and now its everywhereeee literally! My nose, once in a while on my lips, my calves, arms, shoulders, legs, belly, eye, fingers, everywhere BUT WITH NO LESIONS! Which is very frustrating.
- (JULY) An IGM was then done and came negative for HSV1 and 2
- (JULY) Got a swab/culture done on my tongue and it came negative
- (AUGUST) Got another test, the PCR blood test, which apparently looked for virus in the blood - positive
Then in October i got the WB done and it came back negative for both HSV1 and 2
One thing i have noticed is that the twitching occurs more when i become very anxious, but then even when I'm not anxious and I'm busy doing something i twitch so it makes me worried.
The exposure was around the 30th of March to be specific, after giving oral sex. The next day someone else forcefully kissed me as well.
I developed symptoms 2 days after which were these little tiny painless sores on my tongue, it looked inflamed. I couldn't really see it till i looked up close in the mirror. Then it kept recurring every other week or so. I developed a mild fever, headache and general irritability after this exposure. I was very very very anxious that I had caught something. I saw a school nurse and she said it could not be HSV because i would know for sure if it was HSV and there would be lesions and burning in my mouth.
- I then got tested at an urgent care 5 days after this exposure. HSV1 negative, HSV2 positive with a score of 2.21 (SHOCKED as i've never had penetrative sex. I have given and received oral sex though)
THE TWITCHING started in JUNE, about 2 months after i had the first IGG test which came back positive and also after i had finished taking the dosage of acyclovir that was prescribed to me.
The twitching first started in just my calves, then my nose, and now its everywhereeee literally! My nose, once in a while on my lips, my calves, arms, shoulders, legs, belly, eye, fingers, everywhere BUT WITH NO LESIONS! Which is very frustrating.
- (JULY) An IGM was then done and came negative for HSV1 and 2
- (JULY) Got a swab/culture done on my tongue and it came negative
- (AUGUST) Got another test, the PCR blood test, which apparently looked for virus in the blood - positive
Then in October i got the WB done and it came back negative for both HSV1 and 2
One thing i have noticed is that the twitching occurs more when i become very anxious, but then even when I'm not anxious and I'm busy doing something i twitch so it makes me worried.
Any insights?
If the WB was negative, go with that. I'm guessing that's what Terri Warren told you?
The IgG result was a really low positive, and falls in the range of false positives. It also sounds like it would have been too soon for it to show anything from the encounter.
Talk to your doctor about other causes for the twitching. Herpes isn't known to cause twitching.
The IgG result was a really low positive, and falls in the range of false positives. It also sounds like it would have been too soon for it to show anything from the encounter.
Talk to your doctor about other causes for the twitching. Herpes isn't known to cause twitching.
Okay, i will accept that i am negative. One last thing is that if i tested too soon to show anything does it mean that if i was truly positive my IGG would have gone a lot higher? I didn't test with the IGG again after the first time and went straight for the western blot. Do you think that was a smart decision or the IGG might be more conclusive if i test one more time?
I plan on getting a PCR swab the next time i get the tiny sores on the tip of my tongue to test for HSV2. What are your thoughts on that?
I plan on getting a PCR swab the next time i get the tiny sores on the tip of my tongue to test for HSV2. What are your thoughts on that?
Too soon - how soon? Most people will show positive by 6 weeks. If you mean a week or so, you wouldn't have time to develop antibodies by that time to show on the test.
You don't need another IgG if the WB says you are negative. That's the gold standard. You also don't need a herpes PCR swab. If you want to get them cultured for everything to see if there is bacteria in them, I think that's a good idea. I don't think you need to worry about them being herpes, and I'm guessing (though you aren't saying) that's what Terri said, too.
You don't need another IgG if the WB says you are negative. That's the gold standard. You also don't need a herpes PCR swab. If you want to get them cultured for everything to see if there is bacteria in them, I think that's a good idea. I don't think you need to worry about them being herpes, and I'm guessing (though you aren't saying) that's what Terri said, too.
I did get a culture, and they said nothing was shown, so I'm guessing i have to leave it as that.
I did the IGG test 5 days after the encounter and i haven't taken one again to see if the antibodies have increased or not. Should I? Despite the western blot result?
Thanks for taking the time to reply by the way x
I did the IGG test 5 days after the encounter and i haven't taken one again to see if the antibodies have increased or not. Should I? Despite the western blot result?
Thanks for taking the time to reply by the way x
Nope, the WB is enough to know you don't have it. That's all you need. :)
I hope you find the cause for these. It sounds painful.
And you're welcome!
I hope you find the cause for these. It sounds painful.
And you're welcome!
Tbh its not that painful. It's only when my teeth brush against my tongue i feel pain but they look like inflamed taste buds but the only thing that worries me is that they are recurring. One last question, how often does having HSV2 occur or herpes in general on the tongue?
You don't have hsv2. Your WB was negative.
HSV2 rarely recurs orally.
Oral hsv1 is typically on the lips, not in the mouth. If you have sores in the mouth, it's highly unlikely to be herpes, which your tests have proven.
Accept science. Seriously.
HSV2 rarely recurs orally.
Oral hsv1 is typically on the lips, not in the mouth. If you have sores in the mouth, it's highly unlikely to be herpes, which your tests have proven.
Accept science. Seriously.
Hi @auntijessi,
I would like to add that when i first gave oral sex, 2 days after i got symptoms i remember having a burst lip with liquid oozing out. Im not sure if that was a symptom or it was after i got tested and the urgent care gave me azithromicin that caused the lip burst. Can that be a symptom of hsv? Even though i have had the western blot which showed neg for both
I would like to add that when i first gave oral sex, 2 days after i got symptoms i remember having a burst lip with liquid oozing out. Im not sure if that was a symptom or it was after i got tested and the urgent care gave me azithromicin that caused the lip burst. Can that be a symptom of hsv? Even though i have had the western blot which showed neg for both
You don't have herpes, so it can't be a symptom of something you don't have. Did it respond to the azithromycin? That's an antibiotic. Herpes doesn't respond to antibiotics, as it's a virus.
Listen, I get how upsetting this can all be, but you have a negative WB from probably the world's best expert on herpes. If you are having problems accepting this, and can't trust science and Terri Warren, then it's time to focus on getting help for that issue. I say that only with compassion and kindness, no criticism. Talk to your doctor about anxiety, or let us know what country your in, and we can help you find low cost mental health care if you need it.
Listen, I get how upsetting this can all be, but you have a negative WB from probably the world's best expert on herpes. If you are having problems accepting this, and can't trust science and Terri Warren, then it's time to focus on getting help for that issue. I say that only with compassion and kindness, no criticism. Talk to your doctor about anxiety, or let us know what country your in, and we can help you find low cost mental health care if you need it.
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Herpes spreads by oral, vaginal and anal sex.
Herpes sores blister, then burst, scab and heal.
STIs are the most common cause of genital sores.
Millions of people are diagnosed with STDs in the U.S. each year.
STDs can't be transmitted by casual contact, like hugging or touching.
Syphilis is an STD that is transmitted by oral, genital and anal sex.
