Question on conflicting results, with symptoms

[Cantsleepeat]

Hi Terri, I have had irritation in my inguinal folds by the thighs, groin sensitivity, and almost a sunburnt feeling for a couple years. It was almost constant for the first 8 months, but it now worsens around once a month for a weeks time, but never completely resolves. I have not had any obvious ulcers that I am aware of and I have seen numerous doctors and specialists who have ruled all other diagnosis out, some say trust the igg result.

These symptoms started 2 days post possible exposure and I had a low grade 99.5 temp for a few days. I did the following tests starting with the first test 8 days after the encounter. I am a high positive for HSV-1, so excluding that test result.

8 days out – hsv2 1.43 igg/ Supplemental negative
15 days – pcr swab on irritated area – negative
30 days – hsv2 1.41 igg/ Supplemental negative
45 days – hsv2 1.27 igg/ Supplemental negative
46 days – pcr swab negative on irritated areas
63 days – hsv2 1.38 igg/ supplemental positive
90 days – Western Blot HSV-2 negative
205 days – hsv2 1.27 igg/ supplemental positive
210 days – western blot Hsv2 – Negative
340 days — hsv2 1.43 igg/ Supplemental positive

I read a pubmed paper that states the western blot can provide false negatives when a patient has a Hsv1 infection. Basically says with hsv1 it hides the ability to show hsv2.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1276011/

What would you make of this information and these results. I have been abstinent now for a couple years and my groin is almost constantly uncomfortable, sensitive, itchy at times and irritated without visible skin disturbances like a rash etc. Testing is so poor for hsv and I am unsure what to trust and how to proceed. The supplemental test turned positive at about the week 9 mark which seems consistent with hsv2 infection timelines, do I trust that over the blot? Would asking UW to look at my blots again change anything? Should I test again?

I appreciate any help you can provide.

[Terri Warren]

We know that people who are HSV 1 positive can take longer to seroconvert to positive on the western blot. This is likely what was going on there .

We know have 137 people who were positive on the supplemental and negative on the western blot. The problem is with how LabCorp is reading the biokit. They over-read it, and when we reported the 137 false positive results to the maker of the Biokit, they stopped sending it to labCorp to use as a confirmatory testing OR LabCorp decided to stop using it – it isn’t clear which happened but it is no longer available. Believe the blot

Terri

[Cantsleepeat]

1. Is there a way to have them look at my blot again?

2. I have read on here where people have tested negative on blot then positive on swab, do you you know how many times the blot was incorrect?

3. Is there a possibility that maybe this could be Hsv1 that was transmitted to genital after I had a longstanding oral Hsv1 infection in the 30igg range.

4. Would recommend testing again either igg or blot for me, would 210 days be enough time? It would be a huge coincidence to get irritation, chills and a low grade temp for a week 2 dags after the exposure and then have this continuing on after never having so much as an hour of groin irritation in my life. Now all of a sudden it’s almost nonstop for 2 years since 2 days after. I’m at a loss.

5. No Dr I have seen out of multiple specialists, have been able to find the source of this irritation and tell me to trust the igg at this point. Where do I go from here? I am at a loss, I will see anyone to get to the bottom of this, I just have no where to turn anymore and this makes everyday life very difficult affecting not only physical relationships but general activity.

[Terri Warren]

1. Is there a way to have them look at my blot again?
Did you work with me to get the blot?

2. I have read on here where people have tested negative on blot then positive on swab, do you you know how many times the blot was incorrect?
I have had 10 patients in 40 years who were positive on the swab and negative on the blot. This likely has happened for a couple of reasons: testing with the blot too soon after infection or taking daily antiviral medicine daily after a new infection. There may be other reasons as well

3. Is there a possibility that maybe this could be Hsv1 that was transmitted to genital after I had a longstanding oral Hsv1 infection in the 30igg range.
That would be highly unlikely

4. Would recommend testing again either igg or blot for me, would 210 days be enough time? It would be a huge coincidence to get irritation, chills and a low grade temp for a week 2 dags after the exposure and then have this continuing on after never having so much as an hour of groin irritation in my life. Now all of a sudden it’s almost nonstop for 2 years since 2 days after. I’m at a loss.
Herpes would not be the cause of something you acquired that is now happening daily for two years. You are on the wrong track here. Remember that when you come into close contact with another person, there are many things that they might have that you don’t – viruses, bacteria, fungi. You’ve settled on one single virus but there is a lot of evidence that you don’t have it.

5. No Dr I have seen out of multiple specialists, have been able to find the source of this irritation and tell me to trust the igg at this point. Where do I go from here? I am at a loss, I will see anyone to get to the bottom of this, I just have no where to turn anymore and this makes everyday life very difficult affecting not only physical relationships but general activity.
I’m so sorry this is happening to you – genital irritation normally would not interfere with things they way it is for you.

Terri

[Cantsleepeat]

Hi Terri,

I appreciate your response.

1. I did receive both blots through you, the one I took at 3 months and the one I took at 7 months. I was hoping they could take a second look at them.

2. I have had the irritation for two years. It waxes and wanes throughout the month. At its worst, it’s very uncomfortable and my groin becomes very sensitive. If I were to have sex, it would be uncomfortable to the point where it almost feels rubbed raw which is why I haven’t yet. There is nothing that I can see, I did have redness. I have tested negative on fungal and bacterial cultures. Any other tests you can recommend?

3. I appreciate your help though this and wish I had no need to even be here looking for answers. I have seen several different dermatologists, urologists and 2 infectious disease Dr’s who have told me that I should trust the igg result after running a battery of tests. This is why I am having a hard time because it feels as though everyone has given up on me yet my symptoms remain.

[Terri Warren]

I think you are being thrown off by continuing to do useless IgG tests. I hope you will stop.
If you send me an email at the address I gave you for the blot testing, I will ask the lab to reexamine your blot

Terri

[Cantsleepeat]

Hi Terri,

I understand your opinion on the igg, but it appears that the reliability of the blot is starting to be questionable too. I did send you the email as requested.

1. Has there been a large influx of people who test negative on the blot but are in fact positive? I read about a guy who had visible outbreaks monthly for two years who tested negative on the blot through you without taking antivirals, but was negative on the blot. 5 different Dr’s said his case was hsv 100% but the blot said negative. He then tested positive via pcr swab and was not sexually active since attempting to be properly diagmosed.

2. I just read here a female with known cold sores and a 31 igg ask about her negative western blot for both Hsv1 and hsv2. What is causing all these testing issues for the blot? These are just two examples out of about 6-7 cases I found in the past few months regarding conflicting results when compared to the blot.

3. How do I go about daily pcr swab testing without active sores? I think pcr swabs may be the only accurate test there is for hsv. How do I ask my Dr to do this when each Dr says it’s not helpful without sores. They refuse to order one pcr let alone daily swabs.

4. My 3rd blot now at 18 months is running at U of W, but after reading of others false negatives, I don’t think I am going to be able to fully trust these results either. I don’t know how to ever feel confident I won’t expose my partner to what I may have. I want to have sex so bad but not at the expense of having given a loved one an incurable disease. If this blot is negative yet my symptoms are still persisting, what would you do next?

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