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Herpes-Misdiagnosed
In Jan10 I started having severe lower back, pelvic pain, tingling in the sacral, buttock, vaginal lips, thigh & buttock pain, and intermittent vaginal itching so I went to my OBGYN b/c it seemed as though it was related to my cycle and he examined me and said everything was fine and that it may be stressed related (I have severe anxiety). The pain went away after a couple weeks but appeared again in Feb around my cycle so I went to my PCP and she ran some gen. blood work, Lyme and RH Factor-normal results. She then referred me to a neurologist. March - The neoro ordered a MRI of the brain and c-spine-normal resutls. He also ran a HSV IGM blood test and HSV IGG 1&2 blood test because of the recurring buttock/leg pain/tingling. My results were as follows: HSV IGM - Detected - 1.9 (positive); HSV IGG Type 1 – Neg; HSV IGG Type 2 – Neg. He said that I had a recent herpes infection and referred me to an infectious disease specialist (IDS). So I went to see him (March) and he said that I did not have herpes and retested me for Lyme and even EBV, in cause I had a reactivation and was cross-reacting with the IGM test. Of course my Lyme test came out negative again and my EBV IGM was neg. and my EBV IGG was pos. (4.0) which I expected b/c of previous know infection. After that time I became pregnant and in April I didn't seem to have any of the symptoms and in May I had a spontaneous abortion and had a D&C and around my first menstrual cycle (June) after that I experienced the symptoms but this time I had a few red bumps on my right buttock with a burning sensation. I went back to my OBGYN and explained my previous blood work results she said it didn't look it like. She didn't do the HSV IGM test this time but retested my IGG HSV 1/2 which came back neg. again. She did a swab because she said it looked liked I had a yeast infection but that came back negative as well which tests for viruses as well.
MEDICAL PROFESSIONAL
If your husband is your only partner and he has no other new partners, I think further testing is completely unnecessary. If you are concerned he has other partners or you have had another partner, then you may wish to retest. Otherwise, I think you ARE running in circles with no reason. In my opinion, since you asked, seeing a neurologist for a very low positive IgM, a test known to have so many false positives, is over the top.
Terri
Terri
Thank you so much for responding again and I am so sorry for not responding as I've been preoccupied with my daughter being sick. My ID dr. did in fact diagnose me by the IGM test and my recurring bumps and burning sensation on my buttock. My PCP recommended that I see another neurologist which I will be seeing on Nov. 30th. I am still having the recurring bumps, burning, tingling, etc. I have noticed that my tonsils are enlarged, my throat is irritated and my eyes burn during this time too so I definitely think it's related. I just don't understand and the is wreaking havoc on my life and why I can't get a clear cut answer. I went to the dermatologist to try to get another culture but by the time I went she could barely see anything.
In your experience with HSV have you ever seen anyone that only developed IGM antibodies and not IGG? Do you think the steps that I'm taking now, seeing a neurologist again is the right thing? I just feel like I'm running in circles. I keep going back and forth, do I have it or not, how could I recently be infected when my husband is negative or how could I not develop antibodies when my blood work to check my immune system is fine.
I wish I had of never had that test done. I think I would be better off is someone could diagnose me for sure.
In your experience with HSV have you ever seen anyone that only developed IGM antibodies and not IGG? Do you think the steps that I'm taking now, seeing a neurologist again is the right thing? I just feel like I'm running in circles. I keep going back and forth, do I have it or not, how could I recently be infected when my husband is negative or how could I not develop antibodies when my blood work to check my immune system is fine.
I wish I had of never had that test done. I think I would be better off is someone could diagnose me for sure.
MEDICAL PROFESSIONAL
A very few people don't produce antibody, that's correct. Have you had a swab test from this newest place on the buttocks? If not, you could certainly do that. Perhaps 2% of people don't produce antibody. On what basis does the ID Dr. think so clearly that you have HSV 2? The IgM test???
Terri
Terri
Hi Terri,
It's me again. I had another break on both of my butt cheeks and I can't into the dermalogist for weeks. I know you said that it's not odd for people to have bumps on their but it is normal to have the accompanying tingling the the butt/genital area and burning on the butt and legs?
I'm also again worried because I had my follow up visit with the ID dr. and he still insists that I have it and that he will re-do the IGG test for me in 6 months. I mentioned to him, in attempt to make sense of all this, that about the same time I got the bumps on my butt my daughter broke out with bright red bumps all over he bottom (no blistering) and he insists that I may have gotten this from her. The pediatrician said that she had hand, foot, mouth infection. Could she have been misdiagnosed? Would you recommend I have her tested?
This is really taken a toll on me which in turn I've done a lot of research and I read that some people do not produce antibodies. So if that's the case I could have had this for a long time in the latent state? What are the statistics that one does not develop antibodies? I'm wondering now is this attributable to both my miscarriages and some unexplained female issues that I've had in the past.
Again, I really appreciate your opinion because I feel like I don't know what to believe with my doctors and where to turn to next.
Regards,
Me
It's me again. I had another break on both of my butt cheeks and I can't into the dermalogist for weeks. I know you said that it's not odd for people to have bumps on their but it is normal to have the accompanying tingling the the butt/genital area and burning on the butt and legs?
I'm also again worried because I had my follow up visit with the ID dr. and he still insists that I have it and that he will re-do the IGG test for me in 6 months. I mentioned to him, in attempt to make sense of all this, that about the same time I got the bumps on my butt my daughter broke out with bright red bumps all over he bottom (no blistering) and he insists that I may have gotten this from her. The pediatrician said that she had hand, foot, mouth infection. Could she have been misdiagnosed? Would you recommend I have her tested?
This is really taken a toll on me which in turn I've done a lot of research and I read that some people do not produce antibodies. So if that's the case I could have had this for a long time in the latent state? What are the statistics that one does not develop antibodies? I'm wondering now is this attributable to both my miscarriages and some unexplained female issues that I've had in the past.
Again, I really appreciate your opinion because I feel like I don't know what to believe with my doctors and where to turn to next.
Regards,
Me
Hi Terri,
It's me again. I had another break on both of my butt cheeks and I can't into the dermalogist for weeks. I know you said that it's not odd for people to have bumps on their but it is normal to have the accompanying tingling the the butt/genital area and burning on the butt and legs?
I'm also again worried because I had my follow up visit with the ID dr. and he still insists that I have it and that he will re-do the IGG test for me in 6 months. I mentioned to him, in attempt to make since of all this, that about the same time I got the bumps on my butt my daughter broke out with bright red bumps all over he bottom (no blistering) and he insists that I may have gotten this from her. The pediatrician said that she had hand, foot, mouth infection. Could she have been misdiagnosed? Would you recommend I have her tested?
This is really taken a toll on me which in turn I've done a lot of research and I read that some people do not produce antibodies. So if that's the case I could have had this for a long time in the latent state? What are the statistics that one does not develop antibodies?
Again, I really appreciate your opinion because I feel like I don't know what to believe with my doctors and where to turn to next.
Regards,
Me
It's me again. I had another break on both of my butt cheeks and I can't into the dermalogist for weeks. I know you said that it's not odd for people to have bumps on their but it is normal to have the accompanying tingling the the butt/genital area and burning on the butt and legs?
I'm also again worried because I had my follow up visit with the ID dr. and he still insists that I have it and that he will re-do the IGG test for me in 6 months. I mentioned to him, in attempt to make since of all this, that about the same time I got the bumps on my butt my daughter broke out with bright red bumps all over he bottom (no blistering) and he insists that I may have gotten this from her. The pediatrician said that she had hand, foot, mouth infection. Could she have been misdiagnosed? Would you recommend I have her tested?
This is really taken a toll on me which in turn I've done a lot of research and I read that some people do not produce antibodies. So if that's the case I could have had this for a long time in the latent state? What are the statistics that one does not develop antibodies?
Again, I really appreciate your opinion because I feel like I don't know what to believe with my doctors and where to turn to next.
Regards,
Me
MEDICAL PROFESSIONAL
It might be odd, but maybe not so odd. Lots of people get bumps on their bottoms and most often that aren't herpes.
My guess is that your anxiety has taken this focus, as it has with many people. Believe your PCR and me and know that you don't have genital herpes.
Terri
My guess is that your anxiety has taken this focus, as it has with many people. Believe your PCR and me and know that you don't have genital herpes.
Terri
Thank you so much for your quick response! My husband is the only partner I've had for six years. Previous to that I had some un-protected sexual encounters. To address the the anxiety-I've always had general anxiety ever since high school due to a tramatic experience and they put me on medicine for a while and then I've been trying to self-manage it. But it seems I have problems controlling it more now as an adult when I'm stressed out about other things and this issue that I have been dealing with over the past several months has made it a million times worse.
I really appreciate your input and I think I will take my PCP's advice and seek a dermatologist regarding the recurring bumps...as for the tingling/pain maybe it is stress related. I just found it odd that it all occurs in a sequence of events.
I really appreciate your input and I think I will take my PCP's advice and seek a dermatologist regarding the recurring bumps...as for the tingling/pain maybe it is stress related. I just found it odd that it all occurs in a sequence of events.
MEDICAL PROFESSIONAL
The test you want to pay attention to is the IgG only. You are having sex only with your husband, right? If your husband is negative and he is your only partner, then you can see that the IgM is falsely positive, which it is known to be. I'm so surprised that the ID doc didn't know about the troubles with this tests and would even run it. I totally agree with your PCP that you don't have herpes. You need to stop testing for herpes because unless you have a new partner or your husband does, there is no way you could have or get genital herpes.
Have you always had anxiety and is it generalized anxiety or is it specifically about having genital herpes?
Terri
Have you always had anxiety and is it generalized anxiety or is it specifically about having genital herpes?
Terri
Additional Information because it all wouldn't fit....
The symptoms returned in July with a few more bumps/burning and they were on both checks. I also got small red bumps with a yellow center the size of a pin head on each side at the crease of my buttock and thighs. Went back to the IDS. He ran tests on my immune system, HIV test, blood work for several viral/bacterial infections and the HSV tests. A few days later I had a few bumps appears in the crease of my buttock/thigh and I went to him the next day. He did a swab and tested for herpes/shingles-neg. result. My blood work was back and everything was normal except I had a positive HSV IGM (2.1). He said this time that I recently contracted herpes and prescribed me valtrex and told me to me my PCP again because it must be recurring due to stress because my immune system is fine. I went to see my PCP and she disagreed and would like for me to see a dermatologist and she put me on anti-anxiety. My husband was tested for herpes at this time and his came back negative. Also, this could totally be unrelated but since June I have had recurring swollen glands in the throat per the ENT and it seems to come along with my other symptoms as well.
The symptoms returned in July with a few more bumps/burning and they were on both checks. I also got small red bumps with a yellow center the size of a pin head on each side at the crease of my buttock and thighs. Went back to the IDS. He ran tests on my immune system, HIV test, blood work for several viral/bacterial infections and the HSV tests. A few days later I had a few bumps appears in the crease of my buttock/thigh and I went to him the next day. He did a swab and tested for herpes/shingles-neg. result. My blood work was back and everything was normal except I had a positive HSV IGM (2.1). He said this time that I recently contracted herpes and prescribed me valtrex and told me to me my PCP again because it must be recurring due to stress because my immune system is fine. I went to see my PCP and she disagreed and would like for me to see a dermatologist and she put me on anti-anxiety. My husband was tested for herpes at this time and his came back negative. Also, this could totally be unrelated but since June I have had recurring swollen glands in the throat per the ENT and it seems to come along with my other symptoms as well.
You are reading content posted in the Herpes Forum
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.
