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Herpes Confusion
About a week ago, I developed a high fever and some painful ulcerations in my genital area. As my fever skyrocketed (hit 103.5 before going to the hospital), a nodular rash broke out all over my body and my ankles swelled to three times normal size. I went to the hospital and was admitted; there they told me that they thought I had a herpes infection on my genitals and a non-specific auto-immune response with the rash. I was really flabbergasted by the notion of herpes, because I have not been sexually active for almost two years and had no previous outbreak, and had even tested negative at one point. Here's the weird part...when my herpes tests came back, the chronic test was negative and the acute test was positive (I'm not sure which one is IGG and which is IGM). At this time, I also tested positive (ELISA) for Lyme disease, which the doctors attributed my other symptoms to. If they had told me that I had a chronic herpes infection, I could deal with that and move on. However, it's simply not possible for me to have an acute herpes infection (which they define as having been infected in the last 2-3 months). Moreover, another hospital tested me for herpes the day before being admitted at the second hospital and those tests were negative for HSV 1 & 2. Furthermore, the doctor just told me that they performed a generic viral culture after the herpes positive that showed there was no virus present in my genitals. What's going on with me? Is it possible that this is something other than herpes? The rash on the rest of my body is being attributed to some kind of cellulitis that's related to a bacterial infection. Could this be the same rash on my vagina? I think that the doctors don't believe me that I have not been sexually active for so long and seem determined to accept only this positive acute herpes test. I am the only one who knows for sure that I haven't been sexually active and I just want some answers, herpes or no! HELP!
It's not a newly acquired infection so the igm was a poor choice to order in the first place. It's an inaccurate test for herpes and is falsely positive frequently not to mention that in theory it's used to detect a newly acquired infection which if you haven't had sex in 2 years, it's obviously not newly acquired anyways! either your providers aren't thinking or they aren't believing you that you haven't had sex recently.
grace
grace
Actually, the doctors now think I may have an autoimmune condition called Behcet's syndrome. It's very rare, and often misdiagnosed as herpes. However, there is the matter of this "mild positive" IGM test (as they call it), but they seem unwilling to let it go. Could this be false? If it was a "mild positive," wouldn't my symptoms show that instead of raging fever (103-104), nodular rash (definitely not a herpes rash according to the docs) all over my body, raging genital sores and swollen joints? I've read the literature about the untrustworthiness of IGM tests. Moreover, I was on twelve days of valtrex and it did absolutely nothing for the sores. Wouldn't they have gone away if it was herpes? Also, they did a viral culture following the IGM test that was negative. This is a nightmare!!!!!
'active' may have been the more appropriate word to use. Acute was intended as descriptive. And, sorry, but I had friends as a child who spread the infection around their body.
If you've had a 2 year dry spell it most definitely is not herpes going on!! That would've been reflected in your igg and it would've been positive!! There is no reason for any repeating of any herpes blood testing at this point at all.
you can get rashes on multiple body parts with lymes disease. I know when my mother had it this past summer, she had a rash on her groin and then a few weeks later it was on her neck and shoulders. I wish someone would've tried to tell my mom she had genital herpes - that would've been a good one ...he he he. It also explains your swelling issues too quite a bit.
“common use of inaccurate antibody assays to identify infection status with herpes simplex virus type 2” Rhoda Ashley morrow, Zane Brown American journal of obstetrics and gynecology ( 2005), 193, p.361-362 is an article your provider should look up and tell them page 2 has the igm info that they need to read.
grace
you can get rashes on multiple body parts with lymes disease. I know when my mother had it this past summer, she had a rash on her groin and then a few weeks later it was on her neck and shoulders. I wish someone would've tried to tell my mom she had genital herpes - that would've been a good one ...he he he. It also explains your swelling issues too quite a bit.
“common use of inaccurate antibody assays to identify infection status with herpes simplex virus type 2” Rhoda Ashley morrow, Zane Brown American journal of obstetrics and gynecology ( 2005), 193, p.361-362 is an article your provider should look up and tell them page 2 has the igm info that they need to read.
grace
Thanks so much for your informative replies. I have been trying to tell my doctors that there is no way for me to have a recent herpes infection, and after reading the posts that you directed me to, Grace and petal, I'm beginning to think that this is not herpes at all. Another indicator is the fact that the rash all over the rest of my body has been attributed to a systemic cellulitis, or bacterial infection. I'm quite a curiosity to my doctors because a cellulitis rash is rarely disseminated, usually localized. Plus, while hospitalized I received four courses of IV valtrex, with no response. When they started treating me with antibiotics, I immediately started to improve. Anyway, I'm furious because my doctors insist that I must have a recent herpes infection because the IGM test is positive, but I'm starting to believe that I should really only trust the IGG test, which was negative, AND the previous results from a different hospital which has me negative for HSV 1 and 2. My doctors refuse to believe that I haven't been sexually active in almost 2 years. And when I say not active, I mean no foreplay, kissing, nothing...totally celibate. Yesterday the doctor said to me on the phone "well, you must have been involved in some foreplay or something?" Why do doctors assume that I would lie about this?
One of the doctors, an infectious disease doctor, said early on that this might be an autoimmune disorder, and I'm more likely to believe that now. I can't believe the emotional ringer they are putting me through (i.e. having to explain to my parents that I have a recent herpes infection even though I haven't been sexually active). To put my mind at ease, should I have them repeat the IGG test?
This is unbelievable!
One of the doctors, an infectious disease doctor, said early on that this might be an autoimmune disorder, and I'm more likely to believe that now. I can't believe the emotional ringer they are putting me through (i.e. having to explain to my parents that I have a recent herpes infection even though I haven't been sexually active). To put my mind at ease, should I have them repeat the IGG test?
This is unbelievable!
A visual diagnosis of genital herpes is wrong about 1/3 of the time even in practioners who see it often. At this point I assume you haven't been sexually active for it to have been contracted within the last 2-3 months from the sounds of your post?
Continue to follow up on this with your providers. If someone is trying to tell you that because your herpes igm test is + that it means that you have recently contracted herpes or you have an active herpes infection going on, they are misinformed. http://www.medhelp.org/posts/show/248394 is a prior post on the herpes igm blood test and why it shouldn't be used in general on adults and why it definitely can not be used to predict a newly acquired herpes infection.
Many things can cause genital rashes. Many autoimmune issues cause them too. At this point you have a negative igg for hsv2 and a negative lesion culture so if you haven't been sexually active for several months, you know it' s not genital herpes causing the rash.
keep asking questions as you have them :)
grace
Continue to follow up on this with your providers. If someone is trying to tell you that because your herpes igm test is + that it means that you have recently contracted herpes or you have an active herpes infection going on, they are misinformed. http://www.medhelp.org/posts/show/248394 is a prior post on the herpes igm blood test and why it shouldn't be used in general on adults and why it definitely can not be used to predict a newly acquired herpes infection.
Many things can cause genital rashes. Many autoimmune issues cause them too. At this point you have a negative igg for hsv2 and a negative lesion culture so if you haven't been sexually active for several months, you know it' s not genital herpes causing the rash.
keep asking questions as you have them :)
grace
Bliarg, the Herpes Simplex Virus (HSV) has two specific types only: HSV1 and HSV2. The other viruses you speak of are in the Herpes family as a whole, but completely unrelated to HSV. As well, the scenario you state for spreading the virus this way is highly unlikely (it's called autoinoculation and is rare).
Also, there is no such thing as "acute herpes". One either has the virus or they don't.
You may want to read the Herpes Handbook here, http://www.westoverheights.com/genital_herpes/handbook/view_the_chapters.html
or visit http://www.ashastd.org/herpes/herpes_learn.cfm to become better educated about herpes.
pauline820, what were the numeric results of your IgG test? Disregard the IgM, it is for the most part worthless in diagnosing herpes. The IgG is the recommended test.
Also, there is no such thing as "acute herpes". One either has the virus or they don't.
You may want to read the Herpes Handbook here, http://www.westoverheights.com/genital_herpes/handbook/view_the_chapters.html
or visit http://www.ashastd.org/herpes/herpes_learn.cfm to become better educated about herpes.
pauline820, what were the numeric results of your IgG test? Disregard the IgM, it is for the most part worthless in diagnosing herpes. The IgG is the recommended test.
I'm not always as clear as I could be, sorry :-) You may well have acute herpes..picked up in last 2-3 months...and it may have nothing to do with the skin symptoms you now have in your genitals....
There are many types of herpes, has the latest hospital said which? HSV 1 and 2 are not the only ones...I think there are 8 or 10.
Your nodular rash - looks similar to herpes? Is it only at your genital area? Has its appearance changed over the last few days and has the sensation it causes changed at all? Viral culture should be accurate. However, say you picked up herpes in the last 3 months, and had either an outbreak (which you may not have noticed) or viral shedding, touched the infected cells with your fingers and then right away went to the toilet and wiped yourself...something like that, then it is conceivable that you have genital herpes now. It all sounds a bit bewildering and I'm not surprised you've got questions.
There are many types of herpes, has the latest hospital said which? HSV 1 and 2 are not the only ones...I think there are 8 or 10.
Your nodular rash - looks similar to herpes? Is it only at your genital area? Has its appearance changed over the last few days and has the sensation it causes changed at all? Viral culture should be accurate. However, say you picked up herpes in the last 3 months, and had either an outbreak (which you may not have noticed) or viral shedding, touched the infected cells with your fingers and then right away went to the toilet and wiped yourself...something like that, then it is conceivable that you have genital herpes now. It all sounds a bit bewildering and I'm not surprised you've got questions.
Hi
What a mess for you. Hope you feel better.
How strange you should test negative and then a few days later test positive. It might be worth asking for a new antibody test to confirm if you have HSV. It is very unusual, but not unheard of, for labs to make mistakes.
Although herpes is well-known as a STI, it not exclusively so. One could pick it up from kissing a family member in the usual greeting, or if someone around you is in the viral-shedding phase of the infection (they'd have no symptoms and be unable to know, but the virus sometimes wakes up and seeks new hosts by heading to the surface of the skin and breaking free of the original hosts body in cells that you might then have touched with open or vulnerable skin). Also, you might have picked it up, and not had or noticed skin symptoms. So, you might have a new herpes infection even without being sexually active for a while, anad you may not have had or noticed the famous cold-sore anywhere on your body.
I'd ask for an antibody retest just to put my mind at ease. But if it comes back positive, then accept the result.
I don't know enough about cellulitis or bacterial infection or lab testing to offer any other comments, sorry. Hope you figure it out.
What a mess for you. Hope you feel better.
How strange you should test negative and then a few days later test positive. It might be worth asking for a new antibody test to confirm if you have HSV. It is very unusual, but not unheard of, for labs to make mistakes.
Although herpes is well-known as a STI, it not exclusively so. One could pick it up from kissing a family member in the usual greeting, or if someone around you is in the viral-shedding phase of the infection (they'd have no symptoms and be unable to know, but the virus sometimes wakes up and seeks new hosts by heading to the surface of the skin and breaking free of the original hosts body in cells that you might then have touched with open or vulnerable skin). Also, you might have picked it up, and not had or noticed skin symptoms. So, you might have a new herpes infection even without being sexually active for a while, anad you may not have had or noticed the famous cold-sore anywhere on your body.
I'd ask for an antibody retest just to put my mind at ease. But if it comes back positive, then accept the result.
I don't know enough about cellulitis or bacterial infection or lab testing to offer any other comments, sorry. Hope you figure it out.
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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.
