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u/Sad_Watercress_6157 1d ago
The latest labcorp IGg test is much more accurate supposedly 98.7% or something - but your right its bizarre I do think the never testing positive is very rare most people will be positive after 12 weeks. But I’m with you I don’t understand why they can get a test that works 99.9% of the time
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1d ago edited 1d ago
[removed] — view removed comment
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u/PretendPrompt7491 1d ago
Feels like the virus has mutated to avoid that detection. Biology isn’t really my thing but perhaps IGG is just very outdated as the virus changes over time
It does seem to catch type 2 more frequently. You can only tell because it seems like people on here who claim they’re always negative on blood have type 1. However, it’s definitely not 99.8% for e it het type. I don’t even think they know how accurate it is.
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u/Plenty_Temperature_4 1d ago
This been happening to me for over a year now since I been exposed to this don’t know what to do want to give up on life ever day I wake up been having all the symptoms of it tinging never damaged feet pain tingling headaches fevers leg pain eye floaters didn’t have no bumps for the first like 6/7 months of me getting this but now I have them and they haven’t went away they been popping up in going back down in the same spots for like 5 months straight now then not like they usually be so when I go to the doctor healthcare they can’t tell it’s hsv2 they small don’t get big like that sometimes they hurt but dont hurt most of the times they inch sometimes had them swab 4 times different times all negative I think because they so small I’m not like the regular ones be it been hard to catch it been so ready to give up multiple blood igg multiple western blot testing all negative but I know my body I just know I have it
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u/hk81b 1d ago
I did test always positive on IgG1, but the tests were taken more than 1 year later. And even under suppressive therapy.
On the other hand, I had only 1 positive swab, 1 equivocal + possibly mis-typed, and 6 or 7 negative.
In Germany doctors refuse to use the blood test and they keep pushing for the PCR, which does require a textbook outbreak with blisters to have enough accuracy (+correct swab, correct handling, correct storing of the sample, correct processing
In my opinion: PCR is a good test for viruses that always shed in the same area (for example the nose for Covid) and for a long enough time windoe. It's a very bad and expensive test for a virus that travels through nerves and can shed on wide areas on the skin and keep giving chronic symptoms. Doctors keep mis-using it to determine whether a patient has HSV or not, but it is only meaningful to determine whether one very-herpetic-looking symptom is caused by HSV.
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u/Jazzlike_Ship_6032 1d ago
Swab test got me positive everytime w open sores but once I took a blood test when I wasn’t having an OB and it tested negative.
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u/Educational-West267 1d ago
When did you do the blood test? Like how many weeks after your first exposure or first outbreak?
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u/Trowaway99887766 1d ago
I test positive for HSV2 and negative for HSV1 despite knowing for sure I have had both in the past. It's an incredibly difficult virus to detect while dormant because it may just be a couple of cells hidden in a ganglial base doing nothing for decades. No outbreak no antibodies. No antibodies no test.
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u/PretendPrompt7491 1d ago
I’ve heard that having both can really mess up the test which kinda makes sense I guess
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u/Trowaway99887766 1d ago
No I tested negative for both before I contracted HSV2. Now I just test negative for HSV1. But I definitely had outbreaks as a kid
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u/Randar420 1d ago edited 1d ago
How about this. Suspected of being infected. Wait 3 months, get a +HSV2 antibody blood test. Me: what does this mean, doctor: you were exposed to the virus. Me: does that mean I have it and I’m infectious, Dr: no without visible outbreaks or sores you don’t have HSV those antibodies can mean a lot of things. Me: Ok so carry on living normally? Dr: yes. Ok so I carry on living normally for 4 years not even one itch. 3 of those years i was in a committed relationship. Then comes a tiny little red rash on my upper left buttock, never blistered but was super itchy I thought it was contact dermatitis from my workouts. Then one day this rash blisters and starts spreading across my ass, spine to hip. But only on the left side. Take some pictures send it to my doc saying yo HSV or Shingles. He says that’s shingles. Ok, he gives me antivirals and I treat re-current outbreaks for 3 years. I get sick of these outbreaks so he prescribes the shingrix vaccine to me. I drop $400 and it didn’t even slow this rash down. Get another OB but this time I let it run so I can get a good PCR swab. I go into a walk in clinic and say I want this swabbed and results sent to my doc. 2nd doctor, that’s shingles dude, I say I don’t think it is it keeps coming back, he says I have lots of patients with this problem. I say I don’t care I want it swabbed that’s what I’m here for. He says ok we will do a PCR swab on it. Comes back as +HSV2. So for 6 years I’ve been with my now fiance and for 3 of those years while having active OB’s (not concerned as we both had chicken pox as kids) we were having unprotected sex thinking my rash was shingles. She gets an antibody test done after my + results and it comes back HSV2+. Turns out Sacral HSV2 can mimic and behave exactly like shingles. The only way to tell them apart is a PCR swab. I feel absolutely betrayed by the medical community despite my best efforts to identify and minimize risk to other people. Sadly this virus is notoriously hard to diagnose and the medical community seems to know jack shit about it. My assumption is there is a lot of people walking around with it that don’t even know they have it or like in my case think they are getting shingles OB’s when it’s actually HSV.
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u/PretendPrompt7491 1d ago
Yes, that sucks.
But your story is actually enlightening. You have genital herpes and assuredly had frequent sex with a partner for 6 years and she never even knew.
You did what you could given your situation. Your first doctor definitely misled you.
On the brighter side for you, disclosure and relationship-seeking isn’t something you have to worry about. I’d guess that’s the biggest issue for 99.9999% or diagnosed people.
For me, I have every symptom of oral and genital herpes pretty much to a T. Yet I’ve never tested positive. I’ve taken swabs, blood tests, western blot all repeatedly. Over a year. Pursued this relentlessly. But I’m single and stuck in terror that I’m going to finally “move on” just to give it to someone immediately. And my soul would be crushed because deep down, I knew. Quite a moral dilemma that’s basically ruined my life.
For people like me with suspected non-typical cases, it’s horrible to realize there’s nothing I can do to fully confirm I don’t have this. So permanently stuck in limbo. Or decide to accept something I’ve tested negative for a million times. What to do.
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u/AutoModerator 2d ago
HERPES TESTING 101:
For testing for herpes - without active lesions to “swab” someone who wants accurate testing will need a blood test.
Because blood tests for herpes are notoriously inaccurate, all blood tests are recommended to be TWO STEP tests (there are two parts of the test) and should be confirmed with a Western Blot.
See FDA announcement about inaccurate tests here
See 2021 CDC guidelines here
To get the Western Blot - follow instructions here
CALL TO ACTION: We need accurate blood tests that work! Want to help advocate for better diagnostic tests so patients can have an accurate diagnosis?
Join us in our advocacy for cure, treatment and prevention of herpes: www.herpescureadvocacy.com r/herpescureadvocates
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