Herpes IgM results and confusion

[Pinky_1234]

My former boyfriend has had 3 positive IgMs since September, the most recent being drawn this past Tuesday. All of my IgM, IgG and Western Blot samples have been negative. His IgGs have all been negative. Is it safe to say his are all false positives from other things in his body such as having chickenpox as a kiddo? He is asymptomatic. I have had weird intraoral symptoms/sores which is what started this whole testing process. I have had negative swabs as well.

[auntiejessi]

That could just be pimples. Or an allergic reaction, or a long and varied list of other things. Sometimes, a pimple is just a pimple.

How long is the WB supposed to take?

[auntiejessi]

The IgM is an incredibly unreliable test, and they shouldn't even be done on him because he's not a newborn, and it wouldn't be a new infection, which is what the test looks for. The IgM antibodies only last a few weeks.

Here are some things you can read that may help:

https://www.statnews.com/2017/01/26/flawed-herpes-testing-leads-to-false-positives/

https://www.kevinmd.com/blog/2013/07/order-herpes-igm-blood-test.html

http://www.ashasexualhealth.org/stdsstis/herpes/herpes-testing/

You should ignore his IgM tests entirely, and pay attention to the IgGs.

His tests don't matter as much as yours, though. His do help in unraveling your mystery, but your tests are more important. You've had a bunch of negative tests, including the WB, all done at the appropriate times. Even if he does have herpes, you don't.

I'm sorry you still don't have an answer, though. Are they investigating Behcet's?

Here's some info on diagnosing it - https://www.mayoclinic.org/diseases-conditions/behcets-disease/diagnosis-treatment/drc-20351331

[Pinky_1234]

I continued to have intimate relations with him since so I don’t know if I need to start all the testing over? I just saw rheumatology yesterday regarding Bechet’s and it is a possibility. Just have to make sure there is no reason at all that herpes is still a possibility. I had onset of symptoms 08/01/2019 and had testing from 5-weeks on. Western Blot was 14-weeks after and an IgG 15-weeks. I did however continue to see him ‘til around Halloween so not sure what to do. He had positive IgMs in September and then this last draw this week. His IgGs are still negative. He isn’t sure whether to do the blot or what. I am hoping I don’t have to repeat everything.

[auntiejessi]

No, his testing and your symptom timeline means that he didn't have it when you started getting symptoms, so you couldn't have gotten it from him then.

You don't need to redo any testing, nor does he. Most people test positive by 6 weeks, and given that he's had no symptoms, and negative testing up through 16 weeks, he can't have given you herpes. Your tests also show it's not what caused your symptoms to start on 8/1. You'd have tested positive by now on the WB.

I can't imagine how hard this has been, but you can let go of herpes now. It's not the cause of this.

When you figure it out, let us know? I'm so sorry it isn't fully resolved now, but this is a good step forward for you. A lot of Behcet's diagnosing is ruling out other things.

[Pinky_1234]

Thank you so much! It has been a very long and stressful road! They took some biopsies yesterday and did a couple more blood tests that should help rule Behcet’s in or out! Thank you for your response and compassion!

[auntiejessi]

You're welcome, and please let me know what you find out.

Happy Holidays!

[Pinky_1234]

Awaiting his Western Blot and anxiety is in full force. I keep reading articles saying it can take upwards of 6-months to a year in some people to seroconvert. Did I test too early?

[auntiejessi]

I don't know where you're reading that, but 4 months is the guideline. I've never heard of anyone taking that long.

I seroconverted at 2 weeks. The average is 6 weeks. Some people with hsv1 may take a bit longer to seroconvert for hsv2, but it would still be within the 4 months, and you don't have hsv1.

I understand the anxiety, but stick to good sites - Terri Warren's Westover Heights and her Herpes Handbook, the American Sexual Health Association, the CDC.

Also remember that your bf's IgGs are all negative, and your 14-week WB is negative.

What did your biopsies show?

[Pinky_1234]

Biopsies showed nothing more than generalized ulcer. The doc said they couldn’t say apthous ulcer because it was on keratinized tissue and then went on to say that generally the only time they see ulceration on  keratinized tissue is almost always herpes. I asked if a biopsy would have picked up herpes and he wasn’t sure. My blood test for Behcet’s is negative. Aghhh! Periodontist keeps looping back around to herpes because of location and frequency/re-occurrence of sores and it leaves me feeling lost and anxious and not sure where to go from here.

[auntiejessi]

I can't remember, but have they done any swabbing of your ulcers? They should try PCR swabbing of them if they haven't done that already. PCR swabbing is very sensitive and can detect herpes better than regular cultures.

I'm so sorry. I think waiting and trying to figure out a diagnosis - what I call medical limbo - is worse than actually dealing with a diagnosis. :(

[Pinky_1234]

I had a generalized viral culture that was negative and then begged for a PCR culture and it came back negative. The sore was swabbed prob within 48-72 hours of development.

[auntiejessi]

I think that's enough to say you don't have it.

I almost wish I had a different answer for you, because then at least you'd have SOMETHING that was causing this. I found this - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3680271/ - which isn't all that helpful because the patient was diagnosed with Behcet's, but it does have a list of differential diagnoses for oral and genital ulcers. Maybe there's something there that will help.

Let me know what your bf's WB results are, and if you find anything. I'm sorry I can't help with anything more definitive.

[Pinky_1234]

Thank you so much! It’s been one week since the lab received his blood for Western Blot so hopefully within the next couple of weeks we’ll have an answer. The not knowing is painful and leaves me so anxious. I have a new cluster of sores in my mouth and my doctor’s office says they refuse to do any further swabs or blood work, period, end of story. They also told my bf that is 100% has herpes based off of his IgM which you would think would persuade them to continue to test me but nope.

[auntiejessi]

Wow, your doctors suck. It's time to find new ones. I understand why they are refusing to test you more - you've already had conclusively negative tests, including a negative PCR swab, which is about as good as it gets, along with the WB - but they are still calling your BF positive, and that's ridiculous.

After he gets the WB, you should both start looking for new docs. Maybe an allergist? I'm so sorry. I wish I had answers for you.

[Pinky_1234]

Still awaiting his Western Blot results. I have some sort of cluster of pimples or something that looks like a cold sorr on my chin aghhh! What gives?