What is the reality of having herpes

[Joe239]

Dear Terri - I have been battling to find out if I really have herpes for nearly 17 months. I have taken numerous herpes test all type specific (Herpeselect (Immunoblot and IgG), Captia, and Western Blot). All test have shown up negative. I also did some pcr swabing when there were no lessions. I was exposed to a partner that had HSV1 & HSV2. They were unaware they were infected. I kissed this person and recieved oral. My symptoms are as follows: couple weeks after exposure had severe rash on shaft which cleared after 2 more weeks. no blisters. I also had a cut near my lip develop. Pain in uretha but not while urinating. I also had sores on my tongue which developed 4 - 5 weeks after exposure. I contiued to experience sensitivity in my thighs partiularly on the right side to this day. I also feel it in my lower extremities such as toes and I have burning sensations near the anus. I had a sore develop on my lip line 8 months after inital exposure it never blistered it did tingle and I was able to express pus and there was no yellow crusting but I did have sensitivity there for about 9 months after the sore went away.  I continue to get sores on my tongue in the same location which look red and are sore. My regular partner has developed a sore on her lip and she has had discomfort in her genital area (she has not been tested)  My questions are as follows:

1. Could I be positive even though the test show negative? I understand that these test are only about 80%. From what I have read here this happens more often than previuosly thought (false neagtives)
2. What else could it be? Symptoms show in both oral and genital locations
3. What are the difference between canker sores and herpes sores on the tongue?
4. What would you do as a course of action to get to the bottom of this if it were you?

I have spent a lot of money on testing and doctors visits. I just want to feel better and I pray I did not pass something on to my current partner.

[Terri Warren, RN, Adult Nurse Practitioner]

If you continue to have mouth symptoms, go in and have a herpes swab test done.  If it is negative, that should help to ease your mind and the provider that does the swab can actually see what you are talking about and might have some ideas about the cause.

This will be my final post on this thread.

Terri

[Joe239]

I am sorry to keep asking question. But I continue to feel off. I constantly get sores on my tounge. they do not have the white color of a canker sore but more of a red color. Some of my mouth sores I can only feel them with pain and not really see them. Also I have a cut on my lip that is in the middle which is parallel to the opening of my mouth. I looks like a paper cut. Other than reoccurant ob or PHN what coudl this be.

Can a fungal or bacterial infection come and go without a rash but still provide like pain/.sensitivty in a spot that once had something wheater it was a pimple or cold sore.

[Terri Warren, RN, Adult Nurse Practitioner]

I think you can find a dermatome map on the internet - follow the area of the body that you wondering about back to the spinal nerve group.  I seriously doubt that you have herpes in all the locations that you are describing.

Terri

[Joe239]

The reason why I ask about the dermatones is that I get the weird sensations on my genitals in S2 and S3 as well as in my buttocks it is a burning feeling which will sometimes migrate from the genital and buttock area to the back of my legs and calves which seem to follow the dermatone. IT feels like an icy/not rub last for about 30 - 60 seconds moves then eventually disappears. I also get this sensation aroun my mouth and lips.

[Joe239]

Terri,

Thank you for all your answers. I feel as though when I read these forums (STD, Herpes comunity) that unless the presentation is a classic herpes outbreak or a blood test is greater than a five it is hard to get a direct answer. (and I understand this is the Internet). Your answers however go into a deeper breath of knowledge and possibilities based on what you have seen. I appreciate the thought you put into these responses. It is hard for me to get past the 91% blood test accuracy for HSV1 even with 2 neg WB. I am a numbers person.

I did have a couple more general questions. For people with herepes on their arm, finger, lower leg where does the virus hide?

Also whch dermatones are usually affected are they S1-S5 and L1-L5? Is this what causes the sensitivity in those areas?

FYI *** I have arranged with my derm if another sore appears he will see me that day ***

Thank you again. If I do have a culture /PCR test I will post the results.

Joe

[Terri Warren, RN, Adult Nurse Practitioner]

1.  Yes, that is safe to say.
2.  If they are showing symptoms, then yes, they should be tested as well
3.  It comes and goes and it is, for genital herpes, in the lower part of the body, yes.
4.  Canker sores are not caused by herpes, but herpes can be in the mouth, though usually not with sores.  The only way to know for certain is to have a sore swab tested.  Yes, the virus can present as you describe.

I know the error rate of missing HSV 1 infection is troubling.  But you need to pair the results of the test with the fact that you symptoms are simply not consistent with HSV 1 in any way.

Terri

[Joe239]

Some fianl questions:

1. If the partner who had HSV1 & HSV2 tested positive via an IgG test then it is safe to say that transmisson if it did happen would be of a strain that was not G deficient. What I am asking is that a strain cannot mutate from one person to another?

2. Even though my current parnter is showing symptoms as  well which seems very coincindental that really seems odd. my thought here is they should get tested.

3, For post herpetic neuralgia does the feeling of numbness/coolness/sensitivity come and go or is it constant? And does it usually only occur where an OB was?

4. How can one distinguish between canker sores and herpes in the mouth? And do OB happen in the different locations on difernet sides of the midline within 5 days of each other outside a primary infection orally?

Thank you for all your answers.

FYI I have had 2 WB test one at 91 days post exposure and one at roughly 290 days post exposure both negative. I just can not get over the the error rate of the test for HSV1.

Is it possible to have a fungal infection without the rash?

This will end my thread my next course of action is to get a sore swab and find out if it is or is not herpes. I feel at this point if I am positive it will just never show up in the blood work and it is a waste of time and money.

Thank you again.

[Terri Warren, RN, Adult Nurse Practitioner]

The test for HSV 1 misses 9 out of 100 cases of HSV 1, that is true.  The western blot is likely more sensitive for HSV 1 than the HerpeSelect ELISA test.  You might want to try that.  I would be extremely unusual for herpes to present with any symptom every day, it just doesn't do that.  If you  have a negative western blot, I would feel quite reassure if I were you.

Terri

[Joe239]

Thank you for responding. It is HSV1 that I am most concerned over. It appears my current partner for the last 10 years has started to show symptoms but she does not know her own status. I see where Grace, Dr. Hook and Dr HHH all say the test misses 10-15 % of the hsv infections for HSV1. This does not give me a lot of confidence. Especially since I feel as though I continue to have symptoms. The nerve pain I feel is sensitivity to clothes and cold. Where I had the sore on my face is sensitive as well. This pain is not constant 24 x 7 but it is everyday and it comes and goes is that consistant with what others experience? I am at a loss and have been put into a great depression over this

[Terri Warren, RN, Adult Nurse Practitioner]

I don't know where you got the information about the sensitivity of these tests, but you underestimate them!  The test for HSV 2 is about 97% sensitive, and the western blot, perhaps even better than that!  I would believe your results and move on, putting the idea of herpes behind you.  None of your symptoms are particularly consistent with herpes infection, on their own.  

I will answer your questions, however, that you just posted.
It is possible to have both genital and oral outbreaks at the same time - and yes, I have definitely seen that in my practice over the year.

I have seen probably 8 or 9 people over 30 years in practice who test positive by swab test but negative by serology - it has been more commonly HSV 1 but I have also seen it with HSV 2.

I  have seen people who have neuralgia, pain down the leg, from HSV infection, yes.

Yes, the antibody test will pick up antibody, regardless of the strain.

I would suggest that if you get another sore in the nostril or on the lip that you get that swab tested right away, when you first notice it..  

Terri

[Joe239]

You must be busy so when you see this I have a couple more questions.

1. Is it possible to have an OB at the same time in both the genital and oral region? I gather it is rare but is it possible? Have you ever seen it in your career?

2. For most people who never show positive through serology but have a positive culture is it usually HSV1 or HSV2?

3. Have you heard of people having nerve pain or PHN from HSV? Is it only where the OB occered or can it be refered pain in other areas that are near by?

4. I saw in another post there are different strains of the virus does the strain you are infected with matter as to whether or not the blood test will detect the antibody?

Thank you for answering the questions.

[Joe239]

Just wanted to list the timeline and symptoms.

exposed - heterosexual exposure
days later felt strange sensation at uretha opening
14 days later had rash on shaft and head of penis also had a cut near edge of lip- never went to the doctors
test 25 days post exposure for all std including herpes all came back negative
40 days or so after exposure started to get strange sensitive feeling in legs, thighs burning feeling in buttocks, and tailbone area.
tested again 120 days out with immunoblot was still negative for both hsv1 & hsv2
pain persisted in right thigh very sensitive to cold and clothes  also felt some sensation in foot
in spring on a cold blustery day had a tingle on lip and then a red spot appeared. I tried to pop it and could not then the next day I was able to and pus was expressed, then blood and then clear fluid. It never crusted to a hard scab but shed layers of skin it was pink for 3 weeks. This area has stayed sensitive to this day now 11 months. The sensitivity varies through the day.
Took a WB test 10 months from inital exposure and 3 months from thing on lip. this test was negative.
current partner had a sore appear on her lip a couple days after kissing her.
I also had some sore apear on my tongue throughout this entire time which comes and goes but are in the same locations. They appear red. I also recently had a sore on the inside of my nostril again I was able to pop this and pus was expressed. This healed in about 4 days. I decided to take one more HS IgG type specific test 16 months after exposure and still negative.

Do any of these symptoms sound like herpes or should I beleive these test?