3 months of confusion, still no answers

[whywhyme]

I've been dealing with this for 3 months. The day after I slept with this guy,I started feeling pain on my labia. This pain later transfered to my buttocks, and thigh. I went to the gyno after about 2 weeks. She performed the IgM and IgG tests. The IgM came back positive, and the IgG negative. She put me on Valtrex.The medication seemed to calm my pain, but not take it away completely. I have been taking a pretty high dosage of 2 Grams a day for about 2.5 months.

I also went in again for a swab of something that looked like a possible blister. That came back negative.

After 12 weeks I went back to get the IgM and IgG tests done again. Again I received a positive IgM. It says "this specimen tested 'detected' for HSV IgM by the EIA methodology, but tested Negative by the confirmatory IFA methodology." What does that even mean!? I also tested negative for IgG. I am still extremely confused about whether or not I have herpes, and I was hoping that finally I would know for sure after 3 months.

Here are some of my questions regarding my results:

1) I know you and other experts say that the IgM is worthless, but i can't help but feel that there's some truth to the test,especially because i tested positive for it twice,and i have pain. I didn't see any numerical values, it just said "detected”. But is it possible that I just haven't seroconverted to the IgG and that the IgM is indeed picking up herpes?

2) I've ben taking a pretty high dosage of Valtrex for about 2 months now, 2 Grams a day. I read somewhere that that could also be interfering with a positive IgG test, and that that maybe be why the blood test isn't picking up the herpes. Is this true, and how common is this?

3) What should I do next? Should I wait 3 more months, not take Valtrex and get the IgG test? or should i consider getting the Western Blot?

I'm still worried it is herpes because as I mentioned earlier, I'm in constant pain that comes and goes.

[Terri Warren, RN, Adult Nurse Practitioner]

It looks like your IgM test was not confirmed by a second test, so I would call that negative.  I'm not sure exactly what they were doing there, but it definitely looks like it didn't confirm.  Yes, I think the IgM is mostly worthless and it has falsely told many people they have herpes when they don't.

However, your Valtex dosing can indeed alter the correct IgG response considerably.  Especially at the high doses you've been taking.  And yes, what I would recommend is that you stop the Valtrex, wait three more months and redo the simple IgG test, the ELISA.  If that is in question, then you could order the western blot test.  

I suspect you do not have herpes.  Herpes doesn't cause constant pain, just pain with outbreaks now and then.  But only the testing will tell us for sure.  Please ask your provider NOT to order the IgM next time.  Then you will get a clearer picture about what is going on.

Let me know if I can be of more help.

Terri

[Terri Warren, RN, Adult Nurse Practitioner]

No, don't accept herpes and move on.  If you want to know if you have herpes, stay off the medicine and test in 3-4 months.

We can't play this guessing game on the computer, my advice will remain the same, regardless of the symptoms that you describe for me.  I know this is tough, but this is my answer to your question, and I think it is a good one.

This will be my last post on this thread.

Terri

[whywhyme]

Hi,

Sorry I have another followup question. My health is just really crazy and unpredictable. Since we spoke (I guess about 5 days ago) I have completely weened myself off of the Valtrex so I can retest in 3 months. Since then, the pain has intensified and has spread to my thigh and lower leg, and feet. It feels really achy and like shooting pains. The pain is still in my groin and buttocks as well.

Doesn't this mean I have herpes!? It seem that when i take the valtrex the pain subsides and when i don't the pain increases and spreads, so that means I must have herpes. I know the only way to know for sure is to see a positive blood or swab result. But it seems that the valtrex was helping me with the pain....should I just accept I have herpes and move on? Have you heard of herpes spreading to the lower leg and foot? I know it's possible to develop Post herpeutic Neuralgia, I'm thinking I have that.

[Terri Warren, RN, Adult Nurse Practitioner]

You're welcome.

Terri

[whywhyme]

Ok, i guess i'll just have to suck it up and wait.

Thanks so much for answering all my questions.

[Terri Warren, RN, Adult Nurse Practitioner]

Taking the Valtrex interferes with both tests.  The normal seroconversion time does not apply to you now because of the drugs that you have taken.  I have a patient who had classic first infection symptoms, took Valtrex and would not come off, and it took her 9 months to seroconvert, and it only happened when she came off her meds.  

If waiting is torture, come off the meds and wait for either enough time to go by for accurate serconversion or an outbreak that can be swabbed

Terri

[whywhyme]

Also, what if I get the Western Blot test instead of the IgG? Would taking the Valtrex for 2 months also affect the accuracy of those results? Would I still have to wait 3 more months to get an accurate Western Blot result?

I guess I'm just trying to find a way to get this resolved sooner than 3 months! waiting has and will be torture :/

[whywhyme]

Thanks again.

I've read elsewhere that 90% of people seroconvert to IgG at 4 months. Could I theoretically wait one more month (it's been 3 months since suspected exposure), without taking the medicine, and test then?

Also, does taking the medicine slow down the process of seroconversion to IgG or it just makes the virus undetectable? I'm just worried that now I might have to wait a lot longer to seroconvert because of the meds...

[Terri Warren, RN, Adult Nurse Practitioner]

Usually IgM results are presented as a numeric value, I see that yours is not.

Again, continuous symptoms are not usually indicative of herpes.  I'm not clear how the Valtrex is helping if you don't have herpes, though.  It does seem to me that if you had herpes, at some point you would have lesions.

A small dose?  I'm not sure how you are defining that, but suppressive therapy, medicine taken every day, can definitely postpone antibody development.  You would need to be completely off the medicine, I believe, for an accurate test that you can live with as a final result, without questions about how the medicine might be effecting your test results.  Also, if you come off the medicine completely and you DO have herpes, you should have an actual outbreak which can then be swab tested and diagnosed.  Of course, you can stay on the medicine and never know what is really going on.  Your choice.

Terri

[whywhyme]

Thanks for your response. I have three followup questions:

1)How are results for IgM usually presented? Will it give you a numerical value just like IgG? I ask because I didn't see any numerical value in my paperwork, just the word "detected" with the other weird jargon. What does detected mean though?

2) As I mentioned, the Valtrex does seem to calm my pain. It's mainly at the 12 hr mark when my first pill is finishing its run that the mild pain returns, and if i don't take such a high dosage the pain increases.This to me indicates that the Valtrex is helping in some way, which means I have herpes. What do you think? I guess the tests have to show I have herpes in order to have herpes.

3) Would even a small suppressive valtrex dosage impact test results? Do I really have to be completely off of it in order to get accurate results? I ask because I have to wait 3 months, and the Valtrex had been helping a bit so I don't know if i want to get off of it 100%.....?

Thanks!