Herpes Expert Forum
Knowledgeable Help Needed for my Saga
About This Forum:

Welcome to the Herpes forum. This forum is for questions and support pertaining to herpes simplex virus infections (HSV-1 and 2) and herpes zoster (shingles) and the virus that causes it, varicella zoster virus. Questions about genital herpes are welcome both here and on the STD Forum.

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Knowledgeable Help Needed for my Saga

Hi Terri,
Thank you for offering this service.  I have a very frustrating saga that I would like your informed help with.  Thus far in my journey I have encountered many health professionals who are either not very knowledgeable about herpes or have the wrong information.

To start, I don't know if I have herpes or not.  I will run through my story and see what you think.

Background:  27 yr old male
Prior Health Problems: Acid Re-flux - take protonix daily
Sexual History - 1 partner (besides the girl in the story below).  Sex only with long-term girlfriend and only a few times and always protected.  Unprotected oral sex fairly regularly.   I am confident she has never been with anyone but me. She has recently tested completely STD free.

All dates are 2012
April 5 - I gave a female stripper oral sex for approximately 20 seconds.  She grinded on my boxer covered penis for a few minutes and she also simulated oral sex over my boxer covered penis for a few seconds.  No direct genital to genital contact occurred.

April 6 - I felt an odd feeling of dry mouth/very slight shooting pain in my inside left cheek only

April 7 - Full STD panel (except HSV) - all negative.  Given drugs for Chlamydia and Gonorrhea to be safe.  Mouth swab for HSV negative

April 27 - Full STD panel including HSV - positive for HSV2 on IGG with 1.59

May 2 - Tested again - positive for HSV2 on IGG with 1.68

May 4 - Given 2 2000 mg doses of valtex to see if it helped symptoms

May 28 - Full STD - positive for HSV2 on IGG with around 2.21

July 10 - Negative for HIV

August 8 - HSV test - positive for HSV2 no value given

August 20 - Full STD - negative for ALL.  IGG and IGM for HSV 1 and 2 were given a combined value of 0.49

August 27 - HSV test - NEGATIVE for HSV 1 and 2 - combined value of 0.66

August 27 - WB sent out - 3 weeks later INDETERMINATE.  Doctor said that means negative, I called the lab and they said proteins bonded that were not consistent with HSV 1 or 2 so it's indeterminate
55646_tn?1263664409
Has your regular girlfriend been tested specifically for herpes?  If she tests negative for HSV 2, then I believe you are having false positives on the ELISA.  The indeterminate western blot is not all that uncommon in people who have a low positive ELISA.  

Determining whether someone has herpes or doesn't is far more complicated than just looking at test results, in some situations.  Yours is a good example.  If your regular girlfriend doesn't have herpes, then the only other contact you've had is 20 seconds of giving someone oral sex, right?  This is in your whole life, right?

The 20 seconds of giving someone oral sex (and the accompanying activities) is so low risk, I don't really consider it a risk.  

The confusing lab tests appear to me to be reflecting some other protein that is artificially tripping the test for herpes.  That's why you must combine the sexual history, the specific sexual behaviors that you are concerned about and your lack of any sores with this indeterminate test.  I know it is difficult to move on from this, confusing test results can really throw people a curve ball.  But I hope you will take all of this in context, which is very limited sexual experiences and almost nothing that puts you at specific risk for HSV 2.  

I don't think flying out to Portland or Seattle would be helpful, honestly.  Do let me know how the next test comes out, OK?

Terri
30 Comments
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Avatar_m_tn
Can I continue?  I'm not sure how this forum works:

Oct 25 - WB sent out again for convalescent comparison.  Waiting on results.
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Avatar_m_tn
So that worked.

Symptoms:
- No typical outbreak ever.
- Mouth - since April 6.  Feelings of numbness/dry mouth with what i believe to be an extra growth, but doctors all say its not worrisome and may have been there already. That feeling has finally started to subside, but is still there
- from 2 to 4 weeks following exposure - very sore where top of leg meets pelvis both sides (gone now).  Sore testicles (gone now). Pain radiating down back of leg (gone now) pain up through right side and down right arm (gone now)
- from 3 - present.  Constant discomfort in upper pubic area.  No visible rash, but feels itchy and uncomfortable.  Goes away for brief periods and comes back.  2-3 small red dots that look like foliculitus (according to multiple doctors) that go away in 1-3 days.  Small zits that go away in 1-3 days.  Both of those things happened about monthly and we'll see if they continue.  STABBING pain right above penis on right side.  Not incredibly painful, but very uncomfortable and noticeable.  Sometimes will also occur on right side but not nearly as often.

Actions:
I have seen:
- 3 different primary care doctors (i have one I've been seeing constantly through all this who knows about all of these visits.  Didn't necessarily approve, but I did it anyway) (currently seeing 1)
- 4 different urgent care doctors
- 3 dermatologists (currently seeing 1)
- 4 oral surgeons
- 1 dentist
- 1 urologist
- 1 neurologist
- 1 gastroenterologist
- 1 infectious disease specialist (currently seeing)
- 2 therapists (currently seeing 1)

Results
- No hernia
- no prostate problems
- No fungal infection (I'm still not sure about that)
- No other STDs

I have also been going through mild anemia probably independent of this (I also had it about 3 years ago). Because of some of my symptoms along with that, I also had a
- CT Scan - normal
- Upper Endoscopy - normal (besides evidence of acid reflux)
- Full Endoscopy (that little camera you swallow) - normal

I started taking 500mg daily Valtrex to see if it would help my symptoms about 1 month ago.  They seemed to noticeably improve for 2 weeks, then come back slightly for another 2 weeks.  I stopped taking the valtrex 2 weeks ago and the upper groin discomfort has returned.

Also, I have read your book and every other piece of information about herpes ever it seems.  I did a phone consult with your co-nurse about a month out and I've also called the University of Washington Virology clinic several times (they have been very knowledgeable and helpful).

I also know that the fact that I had no direct skin to skin genital to genital contact makes this all the more unlikely and makes my story more confusing.  I also know HSV2 in the mouth is very rare.  I also know that my continuous symptoms are not consistent with how Herpes usually presents itself.

Questions:
- How is it possible that I tested positive multiple times then negative multiple times with an indeterminate WB?

- What else could I have?  What else could this be?  My infectious disease doctor said it is unlikely I have herpes based on the two negative tests and the indeterminate WB.  He said there are tons of viruses that we don't know about and I could have had/currently have one that is similar enough to herpes that it would register on the test initially and that valtrex would help with.  Is this true?

- I wasn't careful right away with washing my hands from my mouth to my genitals.  Is it possible I passed something from inspecting my cheek and then going to the bathroom?

- I would be willing to fly out to Seattle for a week and do whatever I need to do if that would be helpful to figuring out the cause of this.  Would that be helpful?  Would it be helpful to talk in person about all of this?

This is a TON of information I know.  If I need to pay another $20 and take double of your time, I'd be fully willing to do that.  Anything is appreciated right now.

Finally - I've been told that we just might not be able to figure this out and I'll have to just deal with it.  I really and truly can just deal with it from a personal and individual level. However, I would NEVER want to infect another person and I definitely would want to inform them if I have something like Herpes.  I'd really like to figure out if what I have is herpes and if not, what do I tell future partners?

Thanks for your help.
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Avatar_m_tn
Final symptom I forgot to mention:
- I've had somewhat red testicles that feel like they get unusually moist.  This has been happening for last 3 months or so.  The dermatologist said it doesn't LOOK abnormal, but it feels abnormal to me.  He gave me some nystatin after a few visits that seemed to improve it, but when that was gone it just came back.
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Additionally, I know about the placebo effect that the valtrex could have on my symptoms.  Is there anything more medically concrete that could explain why valtrex helped my symptoms?  The obvious answer is that I have herpes, but based on the odd testing history I have, could there be anything else?
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Avatar_m_tn
Thank you for the response.  I will most definitely let you know the results of my test.  To answer your questions:

- Yes, my now former long term girlfriend has been tested for hsv-1 and hsv-2 and tested clearly negative for both of them.
- Yes, in my entire life I've only been with one partner aside from the 20 seconds of oral sex and related activities.  I have kissed probably 4 other girls, but no sexual contact.

Additional Questions:

- Would it be beneficial to get another IGG ELISA done to see if my results have jumped over 3.5?  Would this override the WB or is the WB the test I should stick with for now since it's been described as the gold standard?
- How common is it for artificial proteins to trip the test in your experience?
- If the next WB comes back indeterminate, do I have any further options?  I guess I suggested coming out to Seattle/Portland because I do have some real symptoms that I feel like have to be something, and I didn't know if there additional tests like daily swab tests for asymptomatic shedding.
- I can live with my symptoms, that's fine.  I'm most concerned with infecting future partners, and correctly communicating any potential risk.  At this point, I'm not having sexual contact with current dates.  What is your opinion on this?'
- Finally, have you ever treated anyone with symptoms similar to mine?  What was their course of treatment and/or result?

I realize that based on the whole picture of this entire situation, the risk of herpes is low.  But I could not live with myself if I gave it to someone else.  That's ultimately my main concern here.  Although I would like my symptoms to go away, that is decidedly secondary.
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55646_tn?1263664409
I would go with the western blot results when they come back.  Don't test with ELISA again.

So correct me if I'm wrong, I'm getting a little lost in your posts.  The only person you've ever had intercourse with tested negative for HSV 1 and 2.  

If all of that is correct, and the only experience you have had that is worrisome is giving oral sex to someone for 20 seconds, I believe your indeterminate is really negative.

Let me know how this one comes out.

Terri
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Avatar_m_tn
Correct - the only person I've ever had intercourse with tested negative for HSV1 and 2.

The only worrisome experience was oral sex for 20 seconds, that's correct.  But she was an exotic dancer and after that experience another dancer told me that I should be worried because the other girl may have STDs.  

I have just a few questions that I've posted below:

- How common is it for artificial proteins to trip the test in your experience?

- If the next WB comes back indeterminate, do I have any further options?  I guess I suggested coming out to Seattle/Portland because I do have some real symptoms that I feel like have to be something, and I didn't know if there additional tests like daily swab tests for asymptomatic shedding.

- I can live with my symptoms, that's fine.  I'm most concerned with infecting future partners, and correctly communicating any potential risk.  At this point, I'm not having sexual contact with current dates.  What is your opinion on this?'

- Finally, have you ever treated anyone with symptoms similar to mine?  What was their course of treatment and/or result?

Thanks for your help!
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Any thoughts on my further questions?  Thanks for your help!
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55646_tn?1263664409
I really don't think you are at risk for HSV 2.  It is not common to get an indeterminate western blot, but it does happen from time to time, particularly with people who have low positive ELISAs, we just don't know why it happens.  In your case, given your low risk exposure, if you get an indeterminate and it stays that way for six months, I would consider you a negative.  There is daily home swabbing for shedding, but in your case, that seems a little over the top, given the low risk

We've certainly had many patients over the years who have been in your situation - always hard to know exactly what's going on, but with you and your low risk exposure, I am less inclined to think there is a chance you are infected.

Terri
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Avatar_m_tn
Thanks for your feedback.  I got my first wb at almost 5 months post exposure, and my second one at 7 months post exposure (which I'm still waiting for the results on).  I'll definitely let you know what they say.  Based on your previous comment, if that comes back indeterminate, then I should retest again at 6 months post the first one... if that one comes back indeterminate too, then you'd consider me negative?  I also read about a new test from Illinois that you do in your clinic.  Is that an option if I get an indeterminate on this next test?
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55646_tn?1263664409
Yes, if your next western blot is indeterminate, call my office and we will talk about further testing.

Terri
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Avatar_m_tn
Terri,
I just received the results of my latest WB test.  I haven't seen them, my doctor just read them to me over the phone.  He said that it said negative for HSV-1 and Indeterminate for HSV-2.  This is a bit confusing to me because my last test just said indeterminate for HSV-1 and HSV-2.

Can you help me interpret?  I'm don't understand how now they know for sure on the HSV-1 but the HSV-2 is still indeterminate.  I suppose the next course is to call your office and discuss further testing?
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Avatar_m_tn
Let me clarify, the first test actually just said Indeterminate for HSV.
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Avatar_m_tn
Update:  I called the university of Washington Virology Clinic and they told me that since the convalescent tests went from completely indeterminate for hsv to negative for hsv-1 and indeterminate for hsv-2 that I should wait another 2 months and get tested AGAIN.  They said if that test is also indeterminate then they will have me do a consult with their head doctor who does the test.  Thoughts on that?

I'm still very interested in other testing options as well.
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55646_tn?1263664409
If we talk and you give me your information, I can call the lab and speak with them about actually comparing the two blots. Perhaps that can get us a bit more information.

Terri
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Avatar_m_tn
That sounds great.  I will call your clinic tomorrow.  Is there a better time to connect with you or should I call and set up an appointment?
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55646_tn?1263664409
Just set up an appointment.  You need to become an official patient of ours for me to order any testing for you.

Terri
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Avatar_m_tn
hi Terri, I called the office and setup an appointment for next Tuesday. It will be helpful to talk to you over the phone. I should already be a patient at the clinic because I did a phone consult with a different nurse a few months back. Unsurprisingly, this is not my real name, so I won't have any records under James Brody. I look forward to talking with you soon.
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55646_tn?1263664409
No problem.  I look forward to talking with you.

Terri
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Avatar_m_tn
Hi Terri,
You hopefully received the test copies by fax at your office yesterday.  If not, then they should be there early next week.  Let me know what you find out!  Thanks for your help.
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55646_tn?1263664409
I'm out of the country now for a week, will address this when I return.  But I did see these before I left, and they interpreted them as being exactly the same as each other.
Terri
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Avatar_m_tn
Thanks Terri,
I look forward to hearing from you when you return.  That's fascinating information, I haven't seen the second test, so I'm going to get a copy tomorrow. I am also going to get blood drawn for the other test tomorrow and I will have the lab send it to you.
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Avatar_m_tn
Terri,
I finally saw the second test results, and they also included the first test results on there and they do look identical.  It would be interesting to find out what the lab has to say about why they are indeterminate.  

Additionally, I noticed that it says no change in antibody about halfway down the page.  Do you know what this means?  I never got notice of antibody status in the first place, so does no change mean I have some and the levels stayed the same or I have none and I still have none?  I didn't realize they tested antibody levels with the WB as well.  This would be really interesting since based on the ELISA tests I've taken I went from testing low positive to antibodies to testing negative for antibodies.

Finally, I've been trying to get blood drawn so I can send serum to you.  However, I can't seem to find a doctors office or lab that will do it without either doctor's orders or a testing kit.  Currently, no one will just give me my serum to mail, apparently it's a bio hazard or something according to the lab.  Can you help me solve this?  Is there a kit you can send out?  Or write an order?

Thanks!
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Avatar_m_tn
I didn't reply correctly to the last post.  Will you look at my previous post and let me know what you think?  Thanks!
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55646_tn?1263664409
Quest labs can draw blood for you and ship to somewhere else.  Please contact your local Quest lab and ask them about this. I may need to write an order and you will need to pay a fee but they have done it for others of my patients.  

Let's continue this on the phone as clinic patients, OK?

Terri
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Avatar_m_tn
Yes, we can definitely do that.  I called your office yesterday, so hopefully we can connect soon.  The lab did say they need an order.  Thanks!
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55646_tn?1263664409
OK, we will talk soon then
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Avatar_m_tn
Hi Terri,
I've called your office a couple of times and haven't heard back from you.  What's the best way to get into contact with you?  Thanks!
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55646_tn?1263664409
I'm not sure where you are leaving messages for me - please talk directly to the front desk people to set up a phone consult and we'll be sure to connect.

Terri
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