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Why can't someone diagnose me?
I think with all the research I have done in the last couple of weeks I probably know more about HSV, HSV Testing, and Valtrex than my healthcare provider does. Such a shame considering a vast amount of people are walking time bombs with this disease passing it around to innocent victims.
I think I am one such victim.
For a year and a half now I have been experiencing sporadic symptoms of a UTI. The symptoms began when I started oral birth control for the first time in my life, about 8 months after my first experience with sexual intercourse (with condom). After ruling out the possibility of a UTI by numerous trips to get urinalysis done (all returning normal) and various attempts at treatment from antibiotics (to no avail), I began to think it might be a side effect of the Pill I was on. I switch BC pills and the symptoms continued. I was advised to stay with the pill and see if it would go away, or get off the pill and see if it would go away. I tried both, and neither helped. The symptoms appeared on a monthly basis at first, and then much more sporadically - sometimes disappearing for 2 or 3 months at a time, sometimes lasting for entire months at a time. The symptoms included painful urination to include burning, stinging, needing to go but not being able to, bloating, general abdominal discomfort, and rarely accompanied by fever and nausea. After discontinuing the pill and getting no relief I began to believe it was Interstitial Cystitis (chronic urinary pain with no infection). I was tested for Chlamydia and Gonorrhea, both which returned normal (negative).
Because I was moving around quite a bit at the time, it took a while for me to make an appointment to get to the root of the problem. A few days before my appointment last month, I found bump on the outer part of my labia which popped like a pimple. Then a few days later I found another similar one on the inner labia which was red and turned raw-looking when rubbed. I did some research and at my visit had my doctor test for HSV. She was shocked no one had suggested this sooner. I became convinced I had finally found the source of my discomfort and while extremely emotionally devastated, was at least relieved that I had some answer finally. My blood work was very confusing. I believe this lab uses the Elisa (which I now understand to be highly unreliable) and the initial test returned positive with the type tests both negative. My doctor told me there was no way I could have Herpes 1 or 2. The swab culture she took also returned negative. She recommended I make an appointment with a special urogynecologist to help me find some answers. I can't get in for a few months, but I do have an appointment
When 2 more small bumps appeared, this time in correlation with the painful urination and other symptoms, I returned to the doctor and this time she told me technically my test results were inconclusive the first time and that they should retest me because of the various antibodies, perhaps the first test didn't test for the right kind. I'm awaiting those results but this whole thing seems very vague and fishy to me. I've read about the Western Blot test - should I try that if I get more inconclusive results from the second blood work? I had never had any bumps like this before, only the painful urination. I've been on Valtrex for three days (2g a day) and have showed no signs of improvement. Does anyone know of any other disease that could combine these two symptoms (bumps and painful urination)? The bumps were never painful, just itchy, and only one at a time. They always appeared and disappeared very quickly. My doctor believed that a yeast infection, vaginitis, etc, were out of the question since they don't produce bumps or lesions of any kind.
Just wondering if that test could have been a false positive, or if the type test can be a false negative. Any advice appreciated.
I think I am one such victim.
For a year and a half now I have been experiencing sporadic symptoms of a UTI. The symptoms began when I started oral birth control for the first time in my life, about 8 months after my first experience with sexual intercourse (with condom). After ruling out the possibility of a UTI by numerous trips to get urinalysis done (all returning normal) and various attempts at treatment from antibiotics (to no avail), I began to think it might be a side effect of the Pill I was on. I switch BC pills and the symptoms continued. I was advised to stay with the pill and see if it would go away, or get off the pill and see if it would go away. I tried both, and neither helped. The symptoms appeared on a monthly basis at first, and then much more sporadically - sometimes disappearing for 2 or 3 months at a time, sometimes lasting for entire months at a time. The symptoms included painful urination to include burning, stinging, needing to go but not being able to, bloating, general abdominal discomfort, and rarely accompanied by fever and nausea. After discontinuing the pill and getting no relief I began to believe it was Interstitial Cystitis (chronic urinary pain with no infection). I was tested for Chlamydia and Gonorrhea, both which returned normal (negative).
Because I was moving around quite a bit at the time, it took a while for me to make an appointment to get to the root of the problem. A few days before my appointment last month, I found bump on the outer part of my labia which popped like a pimple. Then a few days later I found another similar one on the inner labia which was red and turned raw-looking when rubbed. I did some research and at my visit had my doctor test for HSV. She was shocked no one had suggested this sooner. I became convinced I had finally found the source of my discomfort and while extremely emotionally devastated, was at least relieved that I had some answer finally. My blood work was very confusing. I believe this lab uses the Elisa (which I now understand to be highly unreliable) and the initial test returned positive with the type tests both negative. My doctor told me there was no way I could have Herpes 1 or 2. The swab culture she took also returned negative. She recommended I make an appointment with a special urogynecologist to help me find some answers. I can't get in for a few months, but I do have an appointment
When 2 more small bumps appeared, this time in correlation with the painful urination and other symptoms, I returned to the doctor and this time she told me technically my test results were inconclusive the first time and that they should retest me because of the various antibodies, perhaps the first test didn't test for the right kind. I'm awaiting those results but this whole thing seems very vague and fishy to me. I've read about the Western Blot test - should I try that if I get more inconclusive results from the second blood work? I had never had any bumps like this before, only the painful urination. I've been on Valtrex for three days (2g a day) and have showed no signs of improvement. Does anyone know of any other disease that could combine these two symptoms (bumps and painful urination)? The bumps were never painful, just itchy, and only one at a time. They always appeared and disappeared very quickly. My doctor believed that a yeast infection, vaginitis, etc, were out of the question since they don't produce bumps or lesions of any kind.
Just wondering if that test could have been a false positive, or if the type test can be a false negative. Any advice appreciated.
No, taking valtrex won't interfere at this point.
Even the best tests we have still miss 1 out of every 10 hsv1 infections. hard to tell if you really have hsv1 or not with your negative test. The combined test can be falsely positive due to many reasons besides hsv1 infection too. it's not a good test any more to use but labcorp still does it for some reason.
grace
Even the best tests we have still miss 1 out of every 10 hsv1 infections. hard to tell if you really have hsv1 or not with your negative test. The combined test can be falsely positive due to many reasons besides hsv1 infection too. it's not a good test any more to use but labcorp still does it for some reason.
grace
Also,
Will taking the Valtrex interfere with any other blood work I want run in the near future? My appointment is this coming Friday. Thanks again.
Will taking the Valtrex interfere with any other blood work I want run in the near future? My appointment is this coming Friday. Thanks again.
Grace,
So if HSV1 is so common, then why (if that was what was causing my initial test to be positive) wouldn't the type specific test for 1 be positive also?
Thanks,
Laurel
So if HSV1 is so common, then why (if that was what was causing my initial test to be positive) wouldn't the type specific test for 1 be positive also?
Thanks,
Laurel
Hsv1 orally is incredibly common around the world. In the US alone, about 60% of adults have it whether they get obvious cold sores or not.
grace
grace
that's the default herpes testing that they previously offered and most providers automatically chose. Labcorp itself didn't chose to run a different test - it's what her provider ordered.
grace
grace
Hi. Lab Corp cannot, and does not choose the test that is run on you. I'm sure you were given a test requisition or a script with the test your Dr wanted to be done.
Grace,
Thanks for all the advice. I do want to follow through with the other tests to be sure. And I WILL give Valtrex a chance right now since there seems to be a marginal chance that I have some form of herpes virus (and that's what my provider is advising until I see a specialist). I've decided to get a second opinion, hopefully with a doctor who is slightly more informed. The blank look I got when I asked my current provider what type of test their lab used as a bit irritating! A couple of things I'd like further clarification on are:
What did you mean about this test that Labcorp uses when you said the initial testing isn't of much use? Can you explain why that is? You said most adults have some form of HSV1 anyway. I'm just curious! So ultimately, even though that is coming back positive both times, because the other two are negative more than likely I don't have either?
I had a severe case of Mono when I was an adolescent. I know that Epstein Barr Virus runs in the Herpes family. There's no chance this can affect the antibody testing, is there?
You guys are doing great things! Thanks for the free advice!
Laurel
Thanks for all the advice. I do want to follow through with the other tests to be sure. And I WILL give Valtrex a chance right now since there seems to be a marginal chance that I have some form of herpes virus (and that's what my provider is advising until I see a specialist). I've decided to get a second opinion, hopefully with a doctor who is slightly more informed. The blank look I got when I asked my current provider what type of test their lab used as a bit irritating! A couple of things I'd like further clarification on are:
What did you mean about this test that Labcorp uses when you said the initial testing isn't of much use? Can you explain why that is? You said most adults have some form of HSV1 anyway. I'm just curious! So ultimately, even though that is coming back positive both times, because the other two are negative more than likely I don't have either?
I had a severe case of Mono when I was an adolescent. I know that Epstein Barr Virus runs in the Herpes family. There's no chance this can affect the antibody testing, is there?
You guys are doing great things! Thanks for the free advice!
Laurel
Yep - I recognize their test so I was pretty sure that's who was doing it.
At this point I recommend not taking the valtrex since you don't seem to want to anyways. Even if you do actually have genital herpes, you never, ever, ever have to treat it if you don't want to. At this point you have pretty much ruled out genital herpes anyways. I say take the WB or the biokit if it's offered for peace of mind. Enough time has passed to do either.
There are so many different things that can be going on with us gals :( The urinary and skin bumps might be related or they might have nothing to do with each other. Unfortunately it's not always quick and easy answers that you can get in 1 appointment.
grace
At this point I recommend not taking the valtrex since you don't seem to want to anyways. Even if you do actually have genital herpes, you never, ever, ever have to treat it if you don't want to. At this point you have pretty much ruled out genital herpes anyways. I say take the WB or the biokit if it's offered for peace of mind. Enough time has passed to do either.
There are so many different things that can be going on with us gals :( The urinary and skin bumps might be related or they might have nothing to do with each other. Unfortunately it's not always quick and easy answers that you can get in 1 appointment.
grace
Also, you are correct in suspecting it is LabCorp. She did mention they use a local LabCorp company.
Hi Grace,
You are right, I was misinformed or misunderstood.. I thought the doctor told me she had used the Elisa, and from what I had initially read to educate myself the old form of Elisa testing is unreliable, but then I read a lot more about how the HerpesSelect Elisa form is actually highly reliable.
When I checked back with her today my doctor said it was maybe some form of the Elisa, but she wasn't sure. The name is (and she read this directly from my test results) HSV 1-2 IGG REFLEX 1-2 Type Specific. I asked for my second tests (run about four weeks after the first test) actual scores and they were for the non-type specific a 2.4 (positive) and for both the 1 and 2 specific were less than .91 (negative). She has me on Valtrex (started off at 1g twice a day for 3 day, now down to 500mg once a day), but I really want a second opinion and a better test run. I prefer natural treatments whenever possible, so it is very disconcerting to me to imagine being on this pill for the rest of my life without knowing the potential long-term side effects. I have an appointment with a well-respected gynecologist next week who I'm hoping to have run the Western Blot or a biokit test or something. Would you suggest this based on my scores, or do you think I'm in the clear? What else could cause both the monthly urinary pain and these new bumps? Or do you think they are two separate and unrelated issues? Thank you guys for what you do and helping us poor folks out!
You are right, I was misinformed or misunderstood.. I thought the doctor told me she had used the Elisa, and from what I had initially read to educate myself the old form of Elisa testing is unreliable, but then I read a lot more about how the HerpesSelect Elisa form is actually highly reliable.
When I checked back with her today my doctor said it was maybe some form of the Elisa, but she wasn't sure. The name is (and she read this directly from my test results) HSV 1-2 IGG REFLEX 1-2 Type Specific. I asked for my second tests (run about four weeks after the first test) actual scores and they were for the non-type specific a 2.4 (positive) and for both the 1 and 2 specific were less than .91 (negative). She has me on Valtrex (started off at 1g twice a day for 3 day, now down to 500mg once a day), but I really want a second opinion and a better test run. I prefer natural treatments whenever possible, so it is very disconcerting to me to imagine being on this pill for the rest of my life without knowing the potential long-term side effects. I have an appointment with a well-respected gynecologist next week who I'm hoping to have run the Western Blot or a biokit test or something. Would you suggest this based on my scores, or do you think I'm in the clear? What else could cause both the monthly urinary pain and these new bumps? Or do you think they are two separate and unrelated issues? Thank you guys for what you do and helping us poor folks out!
The elisa test isn't a bad one at all. Not sure where you got that idea from.
I'm guessing you were tested thru labcorp which typically does a non-type specific test first and then the type specific test if the 1st one is positive. The non-type specific test isn't of much use since most adults at least have hsv1 genitally going on so it will come back + . Also it does have a false positive issue with it too ( a higher one than the type specific ones which is why it's not used very often any more ). The type specific testing you had done came back negative for both hsv1 and hsv2. Since it's been 8 months since you last had sex, your blood test was accurate.
At this point see if you can get in with a dermatologist sooner than the urogynecologist. They will both work together to try to figure out what is going on down yonder for you.
grace
I'm guessing you were tested thru labcorp which typically does a non-type specific test first and then the type specific test if the 1st one is positive. The non-type specific test isn't of much use since most adults at least have hsv1 genitally going on so it will come back + . Also it does have a false positive issue with it too ( a higher one than the type specific ones which is why it's not used very often any more ). The type specific testing you had done came back negative for both hsv1 and hsv2. Since it's been 8 months since you last had sex, your blood test was accurate.
At this point see if you can get in with a dermatologist sooner than the urogynecologist. They will both work together to try to figure out what is going on down yonder for you.
grace
WELL LET ME JUST SAY I'M SORRY YOU HAVE TO GO THROUGH THIS.........IT SOUNDS LIKE HERPES IN SOME WAYS BUT OTHERS I DON'T KNOW ........... I JUST HOPE YOU DON'T HAVE IT SO YOU WONT HAVE TO FEEL THE WAY I DO
AS YES DOCTORS CAN BE DUMB FOUNDED AT TIME........... I JUST HOPE YOU GET THE RIGHT DIAGNOSES SO YOU CAN HAVE SOME RELIEF
AS YES DOCTORS CAN BE DUMB FOUNDED AT TIME........... I JUST HOPE YOU GET THE RIGHT DIAGNOSES SO YOU CAN HAVE SOME RELIEF
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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.
