postherpetic neuralgia did my dr miss my outbreak?

[cnb25]

I have been dealing with a lot over the last 8-9 months still not sure if I have genital herpes or not I will start from the beginning.
11/28/13: ORAL/SEX NEW PARTNER
12/02/13: SEX WITH ANOTHER NEW PARTNER 2 TIMES LATE THAT NIGHT
12/03/13: NEXT MORNING MAYBE 8 HOURS AFTER SEXUAL ENCOUNTER FELT A STRANGE TINGGALY FEELING/CRAWLING FEELING LIKE SOMETHING WASN’T RIGHT
NOT SURE ON DATES HERE BUT THEY WERE DAYS AFTER LAST ENCOUNTER
-FELT SOME VERY PAINFUL BURING OF MY VULVA AND IT WAS VERY RED
-WENT TO OBGYN AND THEY SAID I HAD A YEAST INFECTION ON MY VULVA SO PUT ME ON CREAM AND THEN GAVE ME MEDS A WEEK LATER. ALL OTHER STD TESTS CAME BACK NEG
12/14/13: HAD SEX WITH PARTNER (NOT NEW) USED CONDOMS SEX WAS VERY PAINFUL AND DRY WOKE UP AND THE ENTERANCE OF MY VAGINA LOOKS SWOLLEN
NOT SURE ON DATES
-WENT TO THE OBGYN THEY LOOKED INSIDE SAID LOOKED RED SHE BELIEVES I WAS HAVING A REACTION TO THE CONDOM (HAVEN’T USED ONE IN LIKE 6 YEARS B/C I WAS IN A LONG TERM RELATIONSHIP) SHE SAID THERE WERE NO SORES OR ANYTING CHECKED FOR YEAST AND IT WAS NEG.
-WENT BACK TO THE OBYN PROB ABOUT 4 TIMES IN THE NEXT COUPLE WEEKS B/C I WAS STILL FEELING BURNING INSIDE, POSSIBLE I MADE IT WORSE BY HAVING SEX AGAIN BEFORE I WAS HEALED. SHE NEVER SAW ANY SORES OR ANYTING JUST LOOKED RED. HAD MORE STD TESTS DONE EVERYTHING NEG. DR TOLD ME NOT TO HAVE SEX FOR 10 DAYS GIVE MY BODY A CHANGE TO HEEL.
12/31/13:  1ST HERPES TEST 4 WEEKS PAST POSSIBLE EXPOSURE (REQUESTED BY ME DR DIDN’T THINK I NEEDED IT DONE)
IGG: POS FOR HSV 1 (HAD IT SINCE I WAS LITTLE) AND NEG FOR HSV 2
IGM: HSV 1 ANTIBODIES     1:100      HIGH    TITER <1:10  
         HSV 2 ANTIBODIES     1:100      HIGH    TITER <1:10  
The nurse told me over the phone that I was positive for HSV 1 & HSV 2
01/10/14: WENT IN TO MAKE SURE I WASN’T HAVING AN OUTBREAK OR ANYTING AND TO BE PUT ON MEDS, I ALSO HAD MY 2ND TEST DONE ABOUT 6 WEEKS PAST EXPOURE
01/14/15: WENT BACK INTO DR OFFICE TO BE LOOKED AT AGAIN STILL NOT OUTBREAKS. DR LOOKED OVER EVERYTHING AND SIAD SHE DIDN’T THINK I HAD IT THAT YOU ARE NOT SUPPOSED TO USE THE IGM FOR DIAGNOSISE AND THAT I SHOULD RETEST IN 2 WEEKS. SHE LATER CALLED ME WITH RESULTS OF MY LAST TEST TAKEN ON 1/10/14 AND SAID IT WAS ALL NEG FOR HSV 2 AND THE I DO NOT HAVE IT AND TO STOP THE MEDS. I DID NOT I HAVE BEEN TAKING THEM EVER SINCE.
01/21/14: STILL HAVING DISCOMFERT INSIDE MY VAGINA NOT AS BAD BUT STILL SOME BURNING I WENT AND SAW ANOTHER DR HE DID A CULTURE FOR HERPES  AND RAN ALL STD TESTS THEY ALL CAME OUT NEG.
01/24/14: FELT MUCH BETTER AT THIS POINT HAD COPPER IUD PUT IN.
01/27/14: FELT SOME SWELLING WENT IN DR SAID DIDN’T SEE ANYTHING NO SORES NOTHING THAT IT WAS PROB JUST THE SOPE I USED OR SOMETHING
NOT SURE ON TIME LINES HERE THIS IS IN FEB
-DIDN’T HAVE SEX FOR 2 WEEKS AFTER IUD WAS PUT IN NO PAIN INSIDE NOTHING LIKE THAT JUST SOME MILD SWELLING AT THE ENTERANCE OF VAGINA. I HAD BURNING IN MY VULVA THINKING I HAD ANOTHER YEAST INFECTION STARTED USING CREAM AGAIN. THE BUNING WOULD COME AND GO ITS HARD TO REMEMBER EXACTLY SOMETIMES IT WOULD BE REALLY PAINFULL I WENT TO THE DR THEY SAW NOTHING THOUGHT MAYBE I HAD BV PUT ME ON MEDS FOR THAT. THEY DID FIND I HAD A UTI AND PUT ME ON MEDS FOR THAT. BURNING HAS EVER BEEN THAT BAD AGAIN.
EVER SINCE THIS I HAVE HAD DAILIY SYMPTOMS OF BURNING, ACHINESS, SHARP PAINS SOMETIMES, CRAWLING FEELINGS, SOME SWELLING KINDA LIKE MY PELVIC FLOOR MUSCLES ARE TIGHTENING. SOMETIMES I WILL BE FINE ALL DAY OTHERS I WILL HAVE A COUPLE HOURS OF BURNING AFTER GOING PEE. AND THEN BE FINE.
I HAVE HAD 3 MORE HERPES TESTS DONE
14WEEKS
18 WEEKS
8 MONTHS
ALL NEGITIVE FOR HSV 2
NOW DOES THIS SOUND LIKE HEPRES?
COULD THESE CONSTANT FEELINGS BE FROM POSTHERPETIC NEURALGIA?
COULD I NOW HAVE HSV 1 IN TWO PLACES AFTER HAVING IT FOR 20 YEARS?
WOULDN’T MY DRS HAVE BEEN ABLE TO TELL IF I WERE HAVING AN OUTBREAK?  I NEVER HAD ANY SORES OR ANYTHING AND I WENT TO THE DR ALMOST 2 TIMES A WEEK FOR A WHILE.

I KNOW THIS IS A LOT BUT LIKE I SAID ITS BEEN LIKE 9 MONTHS OF HELL FOR ME. I HAVE A DR APPOINTMENT WITH A VULVADYINA SPECIALIST ON THE 22ND IT’S THE ONLY OTHER THING THAT FITS MY SYMPTOMS.

[TiminBoston]

Actually, I don't  believe you should move and and would, as stated earlier, take Terri's advice and retest 3 months after getting off the meds.

This will be my last post on this thread, but I will not have the last word today be left in this thread by 2 posters who go against my advice when neither one of them knows half of what I do about this virus and the extent to which antiviral therapy absolutely does retard your bodies response.

Good luck with your future tests.

Good luck in all things.

[amw0829]

I strongly suspect you do NOT have HSV-2. Feel good about this and move on! Your issues are related to something else irritating your vulva. This is good news!

[HowardH]

"Do you believe I should move on from this?"

EVERYBODY believes that!

That's my last comment, and perhaps its time for everyone to stop responding. Every reply is obviously just feeding your irrational anxiety. And please don't start a new thread with the same questions.

[Bigtimeworried55]

I agree with Timin and you need to get off the antivirals. Why take a drug when you don't even know if you have HSV2? IGM is useless and shouldn't be used to diagnose you, as your doctor mentioned. At least your doctor knows that much, where mine were majority knuckle heads.

My exposure was almost to the day when you had yours. I also tested negative at 8 months recently and I also agree with what the experts at the U of W said. I call them at times as well.

I've done research and antivirals can affect antibody response, but to what degree is the million dollar question. If you're so concerned about trusting the blood work why would you continue to take the drug? What's the worse that happens? You get an outbreak, rush to get it swabbed and then know your status. You're running around in circles at this point. I've been there !

I would cease the drug immediately (sounds like you won't which is a you problem) and then retest one more time in 3 months. The advise given is accurate and I would follow Timin's advice, although I won't discredit the U of W. The choice is ultimately yours.

In my opinion, it seems you are negative for HSV2 based on your symptoms and details of your situation. However, if you find you can't trust the results and want to stay on antivirals, what more can anyone tell you to help change that?

[Bigtimeworried55]

I agree with Timin and you need to get off the antivirals. Why take a drug when you don't even know if you have HSV2. IGM is useless and shouldn't be used to diagnosed as your doctor mentioned. At least your doctor knows that much, where mine were knuckle heads.

My exposure was almost to the day when you had yours. I also tested negative at 8 months recently and I also agree with what the experts at the U of W said. I call them at times as well.

I've done research and antivirals can effect antibody response, but to what degree is the million dollar question. If you're so concerned about trusting the blood work why would you continue to take be drug. What's the worse that happens? You get an outbreak, rush to get it swabbed and then know your status. You're running around in circles.

I would cease the drug immediately (sounds like you won't which is a you problem) and then retest one more time in 3 months. The advise given is accurate and I would follow Timin's advice although I won't discredit the U of W. The chicory is yours.

In my opinion, it seems you are negative for HSV2 based on your symptoms. However, if you find you can't trust the results and want to stay on antivirals, what more can anyone tell you to help change that?

[cnb25]

So you believe I should listen to them and trust my testing? They told me not to repeat the test after the 18 week one but I though I should anyway and did it at 8 months still neg. Do you believe I should move on from this?

[HowardH]

Agree with all advice you had so far, including 100% reliability of the U of Wash experts. I would add that HSV is not known to cause PHN.  It's a common problem after herpes zoster (shingles) but rare if ever with HSV.

[cnb25]

Whats the point you don't even trust yours at this point and you did get tested off the meds... I think I might always be messed up from this.

[TiminBoston]

I do come up negative every time.  But, there are times (not so much these days) when I doubt the results.

you really need to come off of the antivirals and test again later.

You truly cannot know your status otherwise.

[cnb25]

I know but you finally came out neg didn't you? And yes I really do trust the Wash. U people thats where Terry worked after all. And I am terrified of what might happen. I know I sound crazy but I could even though its rare have hsv 1 genital now. It can happen just not common.  

[TiminBoston]

The U of Washington people know a lot more about the virus than me, so I'd defer to them in every case.  

I hope for your sake, they're right.  But I'll also say that you (like me) have oral HSV1 for a long time.  This means that you more than likely would not have had detectable HSV2 antibodies in only 6 weeks.  I was testing every 3-5 weeks from October until the end of June '14 trying to get a diagnosis.  Always negative despite what I know were strange symptoms.  My point is: I know EXACTLY what you are going through.  EXACTLY.

Why the hell don't you stop taking the antivirals and just see what changes?  

[cnb25]

I called and spoke to the Washington University of herpes research and they told me since I didn't start meds till 6 weeks after possible exposure that my body would have developed anti bodies by that point. They also told me that there is no evidence that antivirals effect blood testing anymore than maybe a month max. Since my last test was at 8 months still came out neg don't you think that is long enough. I have read things like what you are saying but most of those people and their are few of them started meds like the 1st week.  

[TiminBoston]

And a visual inspection is next to worthless until you have a symptomatic outbreak.

I'm not saying you're positive for HSV2.  What I am saying is the your IgG tests are invalid.  

[TiminBoston]

If you haven't stopped taking anti-virals, your body hasn't built antibodies to HSV2.  Which may clear up some things for you.

I don't care what other posters here say.  Read the Expert Forums and do some googling.  MANY stories of people with positive HSV2 cultures who have negative IgG (and Western Blot) tests taken 8,9,10 months later.  In every case, the individual was put on antiviral medication early on and never came off.

The drugs are fighting for you.  Your body doesn't need to and therefore your antibody count will be low.

Terri Warren recommends coming off of antivirals for no less than 3 months before retesting.  During that time, you should have made enough antibodies to turn positive  - IF YOU ARE INFECTED WITH HSV2.

And no, you cannot contract HSV1 at your genitals if you have an established (longterm) oral infection.