Confusion IGM Results & Diagnosis

[riverrocks]

I’m a 33 yo F. STD testing on 1/24/09 & Herpes 1 & 2 IGG Type Spec results were neg at <.91. I had no sexual contact till Aug 8, 9, 15, 16 2009, my suspected infection date & no sexual contact since. About 10 flat white blisters form inside my genital lips & vaginal opening on 8/15. No pain or itch. I had a sore throat, felt flu-like & dull pain in my vaginal area. On 8/18 at gyno culture taken w/neg results. My gyno suspected herpes & gave me Valtrex. The blisters went away in a couple of days. Blood tested on 8/26 for both IGG & IGM. Results were HSV 1 IGG neg @ .25 & HSV 2 IGG neg at .15. HSV 1 IGM neg @ <.8 & HSV 2 IGM neg @ <.8. Blood tested again on 11/23 for IGG only & results were: HSV 1 neg @ .09 & HSV 2 neg @ .52. Gyno concludes neg & suggests dermatologist. In Dec had 1 blister like sore appear on the inside of the labia majora. Looking the same as the other blisters that were inside my labia minora except this time it was extremely painful & there was only one. At derm was biopsied & bloodtested on 12/23. She said by looking at it & the fact that the blisters are not coming back in the same spot suggested it was not herpes, but offered 3 possibilities. Pemphigus Vulgaris (my father had), Behcet's Disease, or Herpes, but she said H was very low on her list. 1/4/2010 I went to get my stitches removed & another doc in her office removed them b/c my doc was not in office. He recv’d my bloodwork back & told me I had Herpes. Results: HSV1 IGG  neg @ .23 HSV2 IGG neg @ .39 HSV IGM AB Screen "detected" at HSV IGM AB Titer 1:10 Spoke to dr & told her the dr who saw me Monday diagnosed me with Herpes & wrote me Rx for Valtrex; I have not filled it. I told her what it says online & she disagreed that IGM tests unreliable. She said that we’ll retest again in 4-6 wks, b/c result in the gray area. I am waiting for the biopsy to come back & for 6 mth mark. Scheduled appt with IDS. If this test is bogus how long should I keep testing for past the 6 mth mark?

[Terri Warren, RN, Adult Nurse Practitioner]

If I'm reading this correctly, you had four months from possible infection to your final antibody test in January.  The IgM test is indeed unreliable.  There are MANY false positives on this test, and all of the reliable sources for herpes information say not to rely on an IgM test at all, not to run it at all, only IgG.  You're negative for both.  The HSV 1 antibody tests picks up 91 out 100 people infected, the HSV 2, about 98 cases out of 100.  So the tests aren't perfect, but they are very good, particularly the test for HSV 2.  I would advice, that since you have had this IGM test done that came back with a questionable result, you won't be at rest until you have a subsequent negative IgG once more.  Six months should be more than adequate.

Terri

[riverrocks]

You are correct; I was biopsied and tested for both IGG and IGM on 12/23 and given blood results on 1/4/10 (still waiting for biopsy b/c of holidays). The blood test was administered at the [4.5 mth mark/18 weeks] counting from last exposure date.

Thanks so much for getting back to me. I will wait for 6 mths (plus a week) to retest to be sure.

[Terri Warren, RN, Adult Nurse Practitioner]

And I will bet you some money that you are not going to test positive!  

Terri

[riverrocks]

Hi Terri, I hope you are right about the blood test being negative that I am scheduled for on 2/2/10 for my 6mth mark. I rcv'd my biopsy results back and I am even more confused. Supposedly they sent the one skin biopsy to two different labs and here are the results.

Outside Lab:
The outside lab did two tests one skin biopsy & results are: "Lichenoid Dermititis which could include lichenoid drug eruption, lichen planus, and herpatic dermatitis". The second test was a Immunoflourescence test off the skin biopsy with results: "Immunoflourescence was not observed with the following antibodies IgG, IgM, IgA, and C3."

Her office Lab:
The other done from her office lab said only "Herpatic Dermatitis".

Both labs show clinical information as Pemphigus vs Behcet's vs Herpes so I'm assuming they tested for Herpes among the others. Today she called to go over the results and to tell me that she was diagnosing me with Herpes based on her office lab results shown above, and to fill a Valtrex Rx and do not spread this, etc. I am not sure if I am grasping at straws or what, but I asked her "did you test for HSV1 or HSV2 on the biopsy" and her response was "I don't think you can do that". That response makes me feel like their office is not up to date on STD testing especially since she was firm about IGM tests being accurate tests, and even diagnosed me off the result in December when I had negative Hepesselect IGG blood tests at 4.5 mths.

I thought you could test for HSV1&2 via skin biopsy, even if it's not type specific? If not specifically, I thought you could at least test to see if it is in fact HSV, and if you can test via biopsy why wasn't it done? Also, I'm not sure what this Immunoflourescence test is? Is this the test that shows whether it's HSV or not? If so, don't the results read negative?

Any guidance would be much appreciated, this is really taking a toll on my emotions. I will repost this question if need be. Thank you.

[Terri Warren, RN, Adult Nurse Practitioner]

No, I don't think they can do virus testing off a biopsy but I could be wrong about that.  The sample is put into this chemical that would probably kill virus in its active state.  Immunofluoresence is a test that also either identies or types virus.  If you were my patient, I would strongly suggest that you trust the negative Herpeselect that you received at 4.5 months post exposure.  And lets wait for the western blot.

Terri

[Terri Warren, RN, Adult Nurse Practitioner]

Whoops, I was thinking of someone else, you didn't have a western blot, nor do I think you need one.

Terri

[riverrocks]

OK, I will definitely keep you posted about my 6 mth IGG test.

Thank you for all that you do on this site!!

[Terri Warren, RN, Adult Nurse Practitioner]

You're welcome. And do be sure to let me know, OK?

Terri

[riverrocks]

Hi Terri,

I received my 6th month IGG test back that I took on 2/2/10 and unfortunately for me HSVI IGG was negative at .10, but HSV II was positive at 2.74 HI. My doctor said it must have been a delayed reaction. So, somewhere between 4.5 months and 6 months of last exposure, it finally showed up.

I was completely abstinent from sex in ANY form from that August date I listed above. I am one of the responsible ones who wasn't going to move on until I knew either way for sure. So my question is, if we are hoping to make ppl aware of this problem, and even better, trying to prevent it, why WOULDN'T we tell everyone to wait 6 mths (worst case scenario) to make sure that you do or do not have it instead of saying 3 mths or 4.5 mths? Isn't it better to be safe than sorry? Well, that's my motto. If I had not been persistent with wanting to know for sure whether I had this or not, and entered into a relationship based on a negative 3 mth or 4.5 mths test result, I could have spread this.

I understand that the IGG tests can detect up to 98% of ppl at the 3 mth mark for HSVII, but all it takes is that small 2% of ppl unknowingly infected with the potential to do a lot of damage to a lot of people's lives. It's just so sad. Yes, I and others diagnosed will "survive", but based on the social stigma, it makes dating very difficult task, among other things like depression, etc. If we can prevent it why not tell ppl to wait 6mths, AND why not teach ppl to get IGG testing done once a year especially if they are sexually active, and most definitely if they are sleeping with various ppl?

Also, just a side note, I was speaking with someone else that I met on a Herpes dating site that told me it took him 6 mths as well. So I guess we were the 2% of that 100% testing scale. :(

While I am sad and angry that this is what I got by making a super poor decision to go backwards by sleeping with my ex, it's frustrating to think most likely my ex will continue to spread this because his attitude is "I didn't know I had it and I don't show any signs" and is probably too immature to go to the dr to know for sure. So while I do not speak with him anymore, I can guarantee that he is sleeping with others and spreading this around saying the same thing to them he said to me. Now that he knows, isn't that illegal to spread this virus knowingly?? Sadly, the reason this continues to get spread is the lack of maturity and denial so many portray.

Best regards.

[Terri Warren, RN, Adult Nurse Practitioner]

You may well have HSV 2, but your IgG value is in the range that in my clinic, requires confirmation (anything below 3.5).  I hope you will get that testing done.  It should be confirmed with western blot, which can be done through Quest labs.

It probably is illegal to have an STD and spread it without disclosing it in some states, but I don't know about yours.  

PLEASE confirm with western blot.  This is the rest of your life.  Your initial symptoms did sound worrisome, but your long negative tests are unusual, though not unheard of.

Terri

[riverrocks]

Thanks Terri, I will definitely get it done to be sure. I'm not exactly sure what the western blot test is or how its taken, so I will research. Is this something I can walk right into Quest for or do I need a doctor's prescription or recommendation?

[Terri Warren, RN, Adult Nurse Practitioner]

It is also a blood antibody test, but is considered the gold standard for confirmation.  Your doctor needs to order it, the Quest lab code is 34534.  Let me know if you have trouble getting it done.  What state do you live in?

Terri

[riverrocks]

I live in New Jersey. I will make an appointment for this week if I can. I will keep you updated, thanks again.

[Terri Warren, RN, Adult Nurse Practitioner]

Sounds good.

Terri

[riverrocks]

Sorry, I'm just confused on something. I'm doing a little research and I'm finding that it's possible for a false positive for HSV2 with a low result like I have at 2.74, but usually only when HSV1 is positive. Is it still possible to have a false positive when I do not have HSV1? Is the reason you are suggesting the Western Blot because of the length of time it took to become positive?

[Terri Warren, RN, Adult Nurse Practitioner]

Yes, we have seen both, false positives in people with or without HSV 1 infection.  I'm suggesting the western blot because of the level of your positivity (2.74) and because you were negative for so long.  It takes longer for people who are HSV 1 positive to seroconvert to HSV 2, but you were negative for both.  Again, it is certainly possible that you have HSV 2 and I was surprised, based on your symptoms that you continued to test negative.  But I hope you will arrange for this test, just to be certain.

Terri

[riverrocks]

OK, thanks. Again, I will post results when they come back.

[Terri Warren, RN, Adult Nurse Practitioner]

OK

Terri

[genx7]

To riverrocks:  

I'm sorry for your diagnosis.  Actually, your story is very interesting to me because I feel like I'm going to be in the same situation soon.  And I'm also from NJ =).  

I tested negative for both HSV I and II 3 times in 3 months post possible exposure.  Normally, I would have been thrilled, but I have been having symptoms since day 1.  And I still have symptoms.  They are mild but basically right on the money for Herpes symptoms.  Right now I am entering the 5th month mark.  I told my doctor that I would like to test at the 6 month mark even though she thinks that I do not have it.  

There is also another person I met online from a Herpes forum who is in a similar situation.  He has tested negative at 3 month mark and even tested negative with the Western Blot at 15 weeks.  

The thing is that we both have very similar symptoms.  I guess it is possible that we both could test negative at 6 months and have something else? but I really have doubts about the Herpes test.  

[OttMar]

You might have something else. Tesing negative multiple times indicates you are negative, if you show negative at 6 months then it must be something else. There are so many HSV tests that people use and if ALL come back neative I doubt that there is something wrong with the testing procedure. Western Blot is the gold standard for HSV testing, if negative with that test at 6 months or 15-16 weeks then its a all clear indication.

I had the Immunoblot at 15.5 weeks and ELISA combined IGG test at 6 months, both negative. You would think that one would pick something up. Even the Combined test, if it picked something up for antibodies then I would have to do type specific testing to see which type HSV 1or 2 it detected.

[riverrocks]

Hi genx, I am going on Thursday 2/25 for my doctor appt so hopefully I will get a WB test done that day & results very soon to confirm the herpes diagnosis.

I can definitely relate to your concern especially if you are having symptoms. Hang in there. I know the waiting and not knowing is really the hardest part to all of this.

[riverrocks]

Hi Terri, I'm having issues getting this test. I went to the dr. yesterday to get a prescription, she wrote on it Western Blot Herpes 2 and she had me write on the bottom the number 34534. Then I went to Quest and Quest couldn't do the test, and after making a couple of inquiry calls the person at Quest told me that she was told I will have to do this test at a hospital. So I went to the hospital last night to have blood drawn. I just got a call this morning from my dr and they said the hospital called and said they can't do this test. The dr's office said to ask whoever told me get this done what the procedures are. This is costing me money from co-pays to now a potential hospital bill for blood drawn. While the hospital still has a "fresh"sample can I get this taken care of somehow? Your opinion is appreciated.

[riverrocks]

Also, I read somewhere on this site that someone went to Montifiore Medical Center in NYC (hospital) and had no problems. I am maybe an hour and a half from there. While I would rather not travel into NYC for various reasons, I would if it gives some closure to this saga. I guess I could surely make the effort this Saturday if they are open. Are you familiar with this hospital? If there is an easy solution to me going back to a local hospital, that would be my first choice. Thank you.

[Terri Warren, RN, Adult Nurse Practitioner]

I am familiar with this, yes.  The person at Montifiore is Dr. Jeff Gilbert and he can help you with the western blot, for sure.

Terri