Major confusion over IgG and Western Blot history of my testing

[pecan]

Hi all

I am wondering about something.

I have a long and complicated story here about a doctor who years ago, told me I had type 2 hsv and supposedly gave me the Western Blot test and then told me that it was positive. Then aabout 15 years later when I asked her to produce the papaerwork, because I had multiple igg tests come back negative for hsv2, over those many years starting at about 2008- I did not believe her. 

There was 2 years of back and forth with that office and that doctor- unable to produce the papaerwork and then saying they lost it, then saying tey were archive and had to be looked for- then saying they found some papers, not all of them- but no western blot test, and finally I was told that I never had that test- when YES I absolutely did and remember distinctly her telling me that it ws from Universirty of Washington, was an out of pocket cost, etc- and then she told me that it came back positive- the entire situation was extremely shady and the doctor was very defensive and ugly about it, there is more to it that I wrote about in my other postst about this but ultimately, it was VERY suspicious, the entire situation.

I have had at least 5 or 6 igg test, maybe even 8- since then (2002)- and all of them have been negative for hsv 2 and positive for hsv 1. That is accurate to my experince as I have had cold sores since I was a kid and never ever had any genital sores and yes I know that spres are not the only way that hsv2 can manifest.

Nobody around here, and I live in a big city, had ever even heard of the Western Blot and there was no way to get another, so I went around in limbo for years and years, mental health basically destroyed over this. I also have complex ptsd so even though it seems like not a big deal to some people, this situation absolutely destroyed me.

I brought it up to my GP nd he hd not heard of the Wetern Blot. BUt finlly in 2022 he was familiar as another patient had asked him to do one. So he then did  Western Blot for me. I had to mail it out myself.

It came back negative. The Western Blot came back negative. 20 years after the original supposedly positive WB test, which my results could not be produced when asked for (granted 15 years later but they should have been archived somemwhere).

I have NEVER had a symptom down theer, EVER. I have had low risk hpv but never any symptoms of hsv2 genitally EVER.

So it makes sense to me that it is negative as well as every single other igg test I have had.

Bt I have this old paper with an igg test from that original questionable doctor- and it has the igg but the number is not like theother tests I have had it says-

hsv2 igG (<1:40)-    and my result was 1:160 (viral antibodies)

So, I think that she based a diagnosis on that result. 

Given my history with these tests and zero symptoms no blisters etc nothing like that I am just at a plalce where I do not know what to think or do.

Would a 2nd Western Blot be false negative? I had not been sexually active for years when I took it. 

All I have paper evidence of is one positive igG form over 20 years ago. And many repeat igG tests that came back negatove for hsv2. And, a 2022 Western Blot that also came back negative. And, have never ha dsymptoms, blisters, etc, genitally.

I have also read here that the time frame for hsv2 to oshow up on a test is actually moret han 4 months alhtough it thought for along time that 4 months was the wait time after exposure. Even the cdc says it can take "16 weeks or more".

Another disconcerting factor is that some people say they have tested positive by swab for hsv 2 yet always test negative on a blood test.

So at this point, I don't know what to believe. 

[mr_hopp]

Hey there @pecan,

Wow, what a journey you've had with all this testing confusion! It sounds super stressful, and I'm sorry you've had to go through so much frustration over this. It's great that you've finally got some clarity with the negative Western Blot result, especially after all those negative IgG tests over the years aligning with no symptoms. It does sound like your initial diagnosis might have been a mistake, especially with the inability to produce those early test results and the strange numbers on that old IgG test. My guess is that first test was *not* a Western Blot since WB is the gold standard and has much higher efficacy than IgG (but it's more expensive, so clinics tend to use IgG as the go-to herpes blood testing method).

A second Western Blot probably wouldn't be necessary if you haven't had any new exposures since the last test, as the test you had is quite reliable. Given your long history of negative results and lack of symptoms, it seems very likely that you don't have HSV-2.

Your experience highlights how important clear communication and accurate record-keeping are in healthcare. If you still have doubts or need more peace of mind, discussing this with a knowledgeable healthcare provider could help, but it sounds like you've been thorough.

Take care of yourself, and I hope you can find some peace after all this!

[pecan]

Oh my health care providers (plural) all know about this- and it really, really- sorry for saying it this way but it all completely fucked me up. I will suffer because of that for the rest of my life. I cannot, absolutely cannot trust the medical community and I have almost no faith- except my GP who has been great over the years. I also had a bad experience with Teri Weston who validated that first shitty doctor's behavior towards me on testing to begin with when my symptoms were NOT for hsv2- they were for HPV- yet she insisted hpv does not itch well YES it can and did. SO based on my low risk hpv itch symptom she insisted that it must be herpes even though again, ZERO physical signs aka blisters, fissures- NONE of those....And I was diagonsed via biopsy with low risk hpv so I was right and she tested me anyway with NO blisters at all for hsv2 then told me wrongly that I was also infected with that. So I went around for 20 years believing I had 2 incurables because back then it was believed that HPV was also permanent and now we know differenlty.

Even the CDC says NO testing for herpes without physical symptoms and a swab. But this individual insisted- as well as taking my blood, my out of pocket payment and then telling me that it was shipped to University of Washington for the Western Blot. I think I even rememeber the cooler in the room with us to transport my blood sample.

I am in a loveless marriage because I went with based a good deal on the fact that I was accepted with these 2 incurables (one I no longer have and the other I never even did).

I was robbed of romance, dating, freedom and my sense  sexual well being, and for NOTHING. And the rejections.... based on a lie.... only compounded my complex ptsd and I am now completely paranoid around sharing my body with anyone ever and have been for many years. I have been celibate with the exception of one person briefly for 10 years now. I am terrfiied absolutely terrified of going  throuhgh something like this again.

AS ell as the original  trauma of having caught hpv form a lying, cheating bf. It was too much. The whole thing really, really helped me along the way to becoming a full blown alcoholic and y health sufers form that to this day, I quit drining 8 years ago but truat me I am permanently affected so it is nont the happy ending.

 

And just to add even more to my complex ptsd the factthat much like my original abusers, there will NEVDER be any justice towards this doctor who permanently and irreversibly damaged my life and sens of safety and trust, even more so that already as one who lives with more than enough trauma, believe me.

Never, ever in my life have I heard of anyone else having an experience like this.... alone again in a completely fcked up experience 😞

 

It's nont safe out here. At all. With anyone.

If you can't trust a doctor then who can you trust? Nobody.

[pecan]

Also, wondering hwat are you thoughts on mistakes regarding the Western Blot? Have you heard of that happening? It is held to such a high standard.