I spoke with you on the phone several months ago about my situation.
I thought I was infected with herpes on May 22, 2012. I had oral sex with another male, and he attempted to insert his penis in my anus (unprotected). The pain was fairly severe, so it only lasted about 5 seconds or so. About two days later, I felt pressure in my rectum and I think I saw 2 or 3 bumps. The pressure increased a bit and subsided in about a week (I was never in tremendous pain). From that point on, I have been experiencing some weird “symptoms” but nothing that screams herpes (pain in the back of my legs, daily tingling on my scrotum and perianal area, little red bumps on my scalp that I can actually see, penis/anus feel tender sometimes if I’m tired or stressed, red abrasions on the inside of my cheeks that become little cuts, etc).
After describing my initial symptoms to my doctor, he put me on Valtrex for a few days. From that point forward, I have been on a rollercoaster ride of antivirals and testing:
6-14-12: Prescribed Valtrex
6-18-12: First Test (HSV1: 0.11 & HSVII: 0.59)
6-20-12: Prescribed daily Acyclovir (1600mg) 8-20-12: Second Test (HSV1: 0.08 & HSVII: 0.54)
9-20-12: Third Test (HSVII: 0.40)
10-25-12: I take your advice and stop taking the Acyclovir, hoping to get an accurate test result.
11-8-12: Fourth Test: (HSVII: 0.61)
1-7-13: Fifth Test: (HSV II: 0.69)
3-11-13: Sixth Test: (HSVII: 0.56)
I stopped being concerned about HSV1 after the first two tests, since it was so low. The consistently higher HSVII number is what really scared me, and I was even more worried when the number started to climb after coming off the antivirals. My doctors have all insisted that “negative is negative” and that I can’t assume anything from the pattern of numbers.
I have tested negative for every other STD (including HIV). Can I trust these 4.5 month test results once and for all or do you think I need to seek out a Western Blot test?
I think, given the values associated with your HSV 2 results, that you should get the western blot, to be certain.
No one has ever claimed that any herpes test is infallible.
I have no idea about the timing of this other person's testing or how much antiviral medicine they took and when or what sexual experiences they had after that, and I won't begin to guess. We, at our clinic, have had 9 people in 31 years that have tested swab test positive and antibody negative or equivocal, via western blot.
You can live in fear of this forever or you can do the best testing possible and leave it at that. If you do the western blot, you will have done all you possible can to detect infection.
I would be happy to order this for you through our clinic or you can order a test kit via UW.
I just wanted to add this... There are several people on another HSV forum who swab tested positive with negative blood tests. One gentleman swabbed positive after testing negative 13 times (once via western blot). I guess this is part of the reason I'm having trouble moving on.
I also continue to feel this sporadic tingling on my scrotum on a daily basis. The doctors are saying it's in my head, but it is so annoying... I have back pain, so maybe that is causing it? I just know I have never felt this in the past- it's so weird...
Thanks so much, Terri. I actually have an appointmnt scheduled with a doctor here in New York on Monday who is supposedly able to order a Western Blot test. I hope it doesn't take a great deal of convincing with all of my negative test results. I had a doctor refuse to retest me last month, and he suggested I see a therapist :(
That having been said, how long does it take to get results from a Western Blot? I've heard it can be up to a month. Is it pretty much guaranteed that the WB result will be definitive at this point?
In an old post, you said that some people have consistently high negatives who are truly neative. I was just wondering how my numbers measure up to your experiences. Is it very rare for someone to test in the range that I have been testing in and still be negative?
Most people who test with a high negative really are negative. There are a few who are positive. Maybe 5%. Most of the time, they are high negatives because they are really negative, but sometimes, they are high negatives as they are passing through that range on their way to a positive. I don't think that fits your situation, though.
Good that you have an appointment, follow through with that and let me know. The western blot can take up to three weeks, in our experience.
Well, I saw my doctor and he didn't know a western blot was even "commercially available for herpes." He flipped through two huge books (one from Quest) and said he didn't see the test. So, what would the next step be to obtain this test?
The doctor I saw also seemed to think that "negative is negative" and that all the tingling and other symptoms are from anxiety. I just don't know what to think- I would swear that I'm really feeling these things. The tingling is uncomfortable and what I would describe as annoying. Is that an atypical symptom that you often see in people who have HSV? I never develop bumps or sores with the tingling, though...
The westerns blot if NOT commercially available, he is correct. You can get it in one of two ways - you can order the test from the University of Washington and have your doctor draw the blood and send it to the lab or we, at the clinic, can order this test for you.
The tingling could be just anything! That alone, without any other symptoms, doesn't concern me about herpes, no.
I was able to call and order a test kit through the clinic yesterday.
Thanks so much for your patience with all of my questions. If you have a few seconds, I have one last question about the relationship between antiviral therapy and antibody production. I’ve read several tests that do prove a delay in antibody response when on acyclovir, and you told me about a patient who took over 9 months to seroconvert because she was on antiviral therapy.
Assuming, for a moment, that I do have HSV:
Would antibody levels not build and continue to rise from the first moment of infection or does the virus need the opportunity to grow and replicate without antivirals to spur further antibody development? As far as I can tell, I have not had an outbreak (if that’s indeed what it was) since the first one. Does the virus need to resurface as an outbreak so that my immune system will be prompted to start fighting the infection again and grow antibodies to a detectable level? By that same logic, should I TRY to make myself have another outbreak by wearing myself down and eating all of the “trigger” foods, so that antibody levels will increase?
I think this is a question people have on numerous forums, and any clarification with your years of experience would be a tremendous help to me and others!
Because antivirals cause a negative impact on viral reproduction (which is their job), they can take away enough virus so that the immune system doesn't see it enough to make an immune response (antibody). Does that help clarify for you?
Let's not have any more posts until you get your testing done.
I just got back from my doctor's office, and I'm kind of back to where I started :( I received the test kit from UW a few weeks ago, and I was concerned about the paperwork that is required when shipping specimens from New York state (where I am located). The doctor I saw made some calls, and he said the New York Health Department has "cut off" the University of Washington for this paperwork as of two weeks ago. . . They even said that UW could be fined for sending me the test kit directly?
In any case, I know there isn't anything you can do about the red tape. My doctor suggested I try to have the blood drawn in New Jersey to avoid the New York paperwork. This is so frustrating!
FWIW, I have been doing some more reseatch on the bumps that I've been getting on my scalp... The dermatologists I saw said they look like folliculitis, but they all failed to mention the possibility of viral folliculitis, which is a possible side-effect of herpes infection! I know people get bumps on their scalp all the time, but I never have before (and they conveniently started showing up about a week after the questionable sexual encounter...) All the evidence is pointing towards herpes, but I really need a test to verify that, so I can feel good about taking the antivirals and telling my wife what the situation is once and for all...
I just made an appointment with a hematologist in New Jersey to have the blood drawn... That seems to be the closest provider in New Jersey who accepts my insurance.
The nurse I spoke with on hte phone said it was a little odd for a hematologist to order this type of test, but she seemed to think that it could be done. I assume any doctor can fill out the paperwork and order the test, right?
This is starting to feel like a Cloak & Dagger mission :)
If you can work it out, then fine.
Our clinic also orders western blots for people who become our patient via phone,
It is news to me that UW has been cut off from doing testing for people who live in New York. That seems odd.
I went to a clinic in New Jersey yesterday to have the blood drawn for the Western Blot. My doctor and his assistant made a few phone calls to the labs they use and found one who assured him they could order the Western Blot for HSV. The doctor assured me that would be easier (and possibly covered by my insurance) as opposed to sending the individual test kit to UW. Does that sound right to you? I know you said that the test is not commercially available...
I went to get myself checked out for herpes 1 2 and 6 and the doc said not to bother because most people have it and when youve got it youve got it for life.So what would be the point on keeping trying to find out if you had it?
Those were my thoughts exactly :) I think it might have been Labcorps, but I wouldn't swear to that... I thought about calling the doctor back to pester him, but I figured I'd find out soon enough. I'll keep you posted...
I know I can't really do anything if I have herpes, but I'm married and would like to know if I need to take antiviral drugs for the rest of my life and use condoms to decrease the chances of spreading this to my wife. I'm pretty sure I have it and that I'm just one of those people with minor symptoms. It sucks if that 's the case, but I feel fortunate I don't have severe symptoms like others.
OK,but dont do yourself in the way I have,eventually I accepted I prob have it but have or dont have the luxury of being in a sexless relationship.
Its the urges that could cause me problems if you know what i mean,anyway try chill drink some wine and feel free and light if not for you just for me xx.
This afternoon, I called the UW virology lab to see if they could confirm ever having received my blood sample for the WB. They said they had not, so I called my doctor back. His technician was all apologetic and said that their lab had screwed up and hadn't sent the sample (probably because they couldn't order the test, as I had initially suspected). They said if I could make an appointment to have the blood drawn again, they would send it directly to UW and forgo sending it to the lab. This was at 2 o'clock, and they closed at 4. I hustled my butt over to New Jersey and made it at 3:30. I gave the technician the UW virology form and my personal check. She was incredibly apologetic and said she had gotten quite upset with the lab over the phone.
I then met with the doctor to discuss my other test results. As I suspected, the HIV was still negative (no real concern there to begin with). As it turns out, he had also ordered standard IGg tests and an IGm test. I know people completely discount the IGm test, but my score on that came back at 1.90, which is considered a high positive (anything above 1.09 is positive). Here's the real kicker... my IGg for HSV1 was still negative (.20) but my IGg for HSV2 was positive. The official score is 0.90, which is technically considered "on the fence," but the doctor said it's definitely positive (considering my past test scores and all the symptoms I've been describing). He wanted to go ahead and do the WB for confirmation, but he officially diagnosed me.
Well, this is kind of what I've been expecting all along. It officially took me almost exactly 12 months to seroconvert for a positive blood test. You have to take the 6 months of antiviral use into consideration, though.
So, this is the official laundry list of my HSV2 symptoms:
*saw 2-3 small, white bumps in my rectum about 2 days after sexual encounter
*daily tingling on my scrotum and in between my butt cheeks
*little pimple-sized bumps that come and go all over my scalp
*tiny little fluid-filled blisters that occasionally appear on the rim of my lower eyelids
*red "abrasions" on the inside of my cheeks that come and go (sometimes they form open "cuts," but they never really hurt)
*tiny little red dots (not raised) the size of a pinhead that appeared on my biceps, scalp, back, etc. (I've read that these are often the sign of a viral infection)
*the white part of my eyes have been much more bloodshot than ever before, but nothing that you would notice standing a few feet away (again, I've read that this can indicate a viral infection)
I am 100% certain that I NEVER had any of these symptoms before. I knew something was not right with my body, and it turns out that I wasn't just imagining things. I guess it's always good to know that you haven't lost your mind, right?
I guess I could stay out of this and let you deal with your doctor alone, but since you posted here, I am going to weigh in.
A 1.90 on the igM is DEFINITELY not a high positive result. It is just barely positive and there are many false positives on this test so I would ignore it.
A .90 on the HSV 2 test is not positive. It is right at the cutoff for equivocal but not positive. The cutoff for positive is 1.1, so you are below that. I don't know why your doctor told you that you are positive.
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