Really conflicting information

[pecan]

Hi all! I wonder if anyone may recall me and my crazy story about hsv2.

 

I was supposedly given a Western Blot by a doctor about 17 years ago. I was told it was positive. I never questioned it, even though I had no outbreaks, ever, "down south". Had cold sores, but not down below.

 

about 7 years after that test I had the Elisa igG test and it came back negative.

 

And then a few years after that I had another one because I thought "surely that must have been a fluke"- and it came back negative.

 

And I had another one a few months back, and again- Negative.  This is all over the course of about 17 years. 

 

I now have THREE NEGATIVE elisa iGG tests. The one that differentiates HSV 1 from HSV 2.  And I have suffered cold sores all my life since I was a kid and all three elisa iGG tests came positive for HSV 1, making perfect sense since I have always, always had symptoms.

 

Now here is what is on the ASHA website regarding IgG tests:

 

"The accurate herpes blood tests detect IgG antibodies. Unlike IgM, IgG antibodies can be accurately broken down to either HSV-1 or HSV-2. A recent study corroborates this finding: labs that used non-gG-based tests for herpes had high false-positive rates for HSV-2 antibodies (14-88% saying the blood sample was positive for HSV-2) in samples that were actually only positive for HSV-1 antibodies. But 100% of the labs using gG-based tests accurately reported that the blood sample was negative for HSV-2."

 

Again:

" But 100% of the labs using gG-based tests accurately reported that the blood sample was negative for HSV-2."

 

Now to add to the mix, I requested all my records from the original doctor who supposedly gave me the Western Blot. And I recall the whole procedure- how my blood sample had to be shipped out to Washington State and they were the only ones who offered this test, and how insurance did not cover it and I had to pay for it out of pocket. This was all a good 17 years ago, maybe slightly longer.

 

The doctor sent me a few pieces of my records but nothing anywhere said University of Washington. Nothing anywhere said "Western Blot". She did an IgG and IgM test, it appears- and again, no thing in my papers about Western Blot or University of Washington. Nothing.

 

I called and inquired about that, as at this point I had done 2 Elisa iGG tests that both came back negative. I asked for ALL of my paperwork.

 

I was then dodged, and avoided, and then they "lost" my records- for about two years. And then, finally- the doctor simply denied ever having done a Western Blot.

 

So I believed I had HSV 2 for about 15 years or more of my life- and now I have not one, not two- but THREE iGg type specific tests.

 

So.. that's where I am today. Sitting here with the paper in my hand from this past November with my third HSV 2 type specific1/2 igG test that states "negative" for HSV2.

 

So... thoughts?

 

 

[tiredandlonely]

The Western Blot looks for all antibodies/proteins associated with HSV-2, not just IgG. 

The IgG test can miss HSV-2 if your IgG levels are low, but since a Western Blot checks everything, it's less likely to miss an infection. 

Western Blot is over 99% accurate for HSV-2. IgG is about 92% accurate. 

17 years is a long time and it is possible that the results were filed incorrectly/not stored properly; especially with the switch to electronic medical records over that time period. Likely all records were scanned in, and they might have missed this. I would be really skeptical that the test wasn't performed at all because you paid for it and your doctor reported a result to you. 

IgG misses about 8% of HSV-2 cases. It's possible that your body just doesn't produce enough IgG antibodies to be detectable on the test. If you're in this 8% of people who don't test positive on IgG,  it wouldn't matter how many tests you have; your body isn't producing those antibodies so they won't be detected.

I'm really sorry you're in this situation because it must be so frustrating and confusing.  I think you have a choice to make: you can believe the negative IgG test, which is 92% accurate, or you can repeat the Western Blot through a more reliable healthcare provider.

If I were in your position, I'd probably just go ahead and get the Western Blot again because I would want to know. I think it's a waste of time to continue with the IgG testing. If the WB is negative, you can move forward knowing you don't have HSV-2 and that your doctor 17 years ago made a mistake. 

However,  you can also believe the negative IgG test, with 92% certainty. I don't think anyone would fault you for this. 

[pecan]

Well, with the attitude this doctor had I actually wouldn't be surprised if she never actually gave me the test. I mean why would she simply "report" a result and not show me anything on paper at all for my "gold standard" Western Blot test- but go ahead and show me papers for the other tests, those many years ago when I was in her office as a patient?  And even if I had a Western Blot again now- if it did come back positive that doesn't mean I had it back then, it could mean I got it after that test. Agin though, this doctor's attitude was just not right and I really wouldn't put it past her.

And if someone is going to tell me something as life impacting as I have hsv2- they better send me home with papers in my hand. Or be able to produce those records later. I don't care how long it is! And ultimately she didn't cop to losing my results- she just denied ever giving me the test. And there was SO much shuffling me around- it was super shady- I actually asked to just get another Western Blot and she put me on hold, then just said I had to talk to someone in the lab, and then when I got someone in the lab they fast talked me a bunch of stuff that had nothing to do with me actually having another test- just really fast talking me- then tol dme I had to talk to someone else andthen ultimate;y just left me on hold forever until I gave up and I never had another test. And this was all TWO whole years after trying to get my papers! And being put off, and put pff and put off.

 

It has all taken a great mental and emotional toll on me and also, because I have the good fortune to already have hsv 1 and have had low risk hpv, I have several permanent std's so I have had to carry this burden since I was young and never got to be in a good, long term relationship. It's one thing to have to say "I have herpes" but when you have to say "I have both types of herpes AND hpv and I had the warts kind of hpv... well, I am living proof of how hard and lonely your life will be. I am finally married and it's to someone who doesn't even treat me right really, but I have to date based on who will accept my std's. It's soul crushing I can't lie. I suppose that's another topic though.

 

Also a few more questions- as for the hsv 2 test not deteecting it 8 % of the time- do you mean that 8 percent of people will just never test positive for it even though they have it? or that there is an error with the test 8% of the time? Because I can't have fallen into the 8 percent THREE whole times! 

 

Also, what are your sources for this info and can you show me them here?

 

Another question- O have called and called al over (a few years back) asking for a Western Blot test and most people have no idea what I am talking about. Not my gp not anyone. It doesn't seem to be available here.

 

SO, does anyone know a doctor in Chicago who will 1) know what I am talking about when I say "Western Blot Test" and 2) do the test?

 

Please don't direct me to Terri West. She has been invalidating towards me and frankly, rude in the past- after she had my money.

[tiredandlonely]

You seem incredibly angry and distrustful, and I don't blame you. You have clearly been through a lot and have suffered deeply. 

It seems like you've been carrying this around for along time, and I don't think it is serving you. It seems like you have decided to confront these issues and deal with them now, so I hope that whatever you choose to do/believe/feel helps you to find some peace. 

You state that you have conflicting information about whether or not you have HSV-2. I'm sure you already know that the Western Blot is a superior diagnostic test than the IgG. This means that a positive WB beats a negative IgG and a negative WB beats a positive IgG. It is more comprehensive assay. 

You have had 3 negative IgG tests. Unless you were only recently exposed, I don't see a point in retesting endlessly. The test looks for a protein (antibody) that is made by the immune system. If your immune system doesn't make enough of it, it won't be detected by the test. That's where the 8% "failure rate" comes from.

Most people who have a negative IgG can accept that they don't have HSV-2, unless there are complicating factors. 

In your situation, the complicating factors appear to be that you did have symptoms and that you did (possibly) have a positive WB. 

It sounds like your doctor handled this situation poorly and I don't want to invalidate what you've gone through or speculate about what could have happened to your results. 

I think these are your options:

1. You can choose to believe that the WB was never run. In the absence of ongoing symptoms, you can believe your IgG test results and move forward with your life. 
2. You can take the WB now and put any doubts about your status to rest
3. You can contact UW directly and see if they still have your results on file. I'm not sure how things are handled, but because they do a lot of research in herpes testing, they may still have this data.

I don't know of any doctors in Chicago because I am not from there. I do know that Chicago is a big city and you should be able to find a doctor who is willing to work with you on getting this test. 

However, if they're not used to ordering it, simply calling around and asking about this is probably not going to be the best strategy. Most doctors offices won't be readily equipped to collect a sample for this test. They need certain tubes and instructions for processing.

You can contact UW directly and have them send you a kit that will provide everything that is needed. You can also ask for guidance on what to ask doctors' offices when you call around to find someone who will order the test. The facility you go to will need a lab that can spin down the blood - this (and the doctor's willingness to work with you) is really important.

Links/Resources for you:

Contact info for UW: https://depts.washington.edu/uwviro/order/

The publication that discusses IgG vs. Western Blot is here: https://www.ncbi.nlm.nih.gov/pubmed/28876290

Information on Western Blot accuracy is here: http://depts.washington.edu/uwviro/herpes-serologies/ (click on "Herpes Simplex Types 1 and 2 by Western Blot")

[pecan]

Well, I have never had a blister down there ever, which that plus the fact that I have several negative tests really lead me to believe I haven't got the hsv 2 virus. That doctor was fast to jump on the Western Blot test because my genital warts were itching and she insisted, absolutely insisted that genital warts just never, ever itch. Well I know that to be completely and inarguable untrue. Yes they absolutely can and do often itch. And just to add to my fear and mistrust- I had to suffer the warts for almost 10 months and see several doctors over that time who all insisted that I was fine and there was nothing wrong with me and that I did not have warts- I had to beg and insist for one doctor to just finally do a biopsy and she was so mad and acted like I was a hypochondriac- and then lo and behold... she calls me and tells me the biopsy was positive for condyloma acuminata-  a.k.a, genital warts. I was right. 

 

 Again though, if that other doctor had been able to produce the test results of a Western Blot or at the very least admitted she lost them or even followed through with giving me another test like she said she would instead of phone shuffling me around, avoiding me and putting me off- and then ultimately just leaving me hanging - I'd believe her. And then I have to question how many other people out there are also testing negative, yet "really have" hsv 2 and just haven't had a Western Blot- which apparently nobody else in my city has ever even heard of.

 

You are correct, I'm mad about all of this. I mean this is really way too much mental/emotional stress for years and years, plus the ethical burden of what on earth was I supposed to tell partners and then any kind of dating was honestly destroyed once I went into this long and complicated tale. Zero romance, zero spontaneity. My life has been totally compromised. And I seem to read quite often that doctors don't really push for the hsv tests in absence of overt symptoms because of the consideration of the patient's mental health- and I really wish that had been the consideration taken with me because I can't think of a worse, strange and lonely purgatory to be in. I have friends who have even asked at clinics to be tested for herpes and they refuse to do it in the absence of overt, "classic" symptoms". My sexual health, self image, self esteem and mental health have all been extremely damaged by this not knowing whats really going on with my body- and having to try and access a very hard to obtain test, if I do want to know-  and take on the mental burden of that test and also have to try and explain to doctors about the test because it has to come from out of state... they act like I have 2 heads when I try to even bring it up and they all discourage me from it- I have called doctors, labs... for years. And yes you would assume that  big city like mine would make it simple but unfortunately it is not at all. simple

 

I have already contacted the U of W lab ( about a couple of years ago) and they only hold results for so long- mine if I had any- would be long gone. 

The whole thing makes me want to cry ( some more). I feel like it would only be me, my life that would ever have this ridiculous and complicated circumstance. Nowhere on this site will you find a tale like this.

 

I feel that most if not all people would let sleeping dogs lie on this matter. I don't know if I feel more responsibility to find out because females typically do take more responsibility with their health or what. But I just wish to god my life didn't have this insane, very long and ongoing chapter.

I appreciate you being mindful enough not to invalidate me because honestly I think this situation would drive anyone nuts.

 

Thanks fro reading and responding. Sigh I am sorry I hope this isn;t stupid but can you be my online pal here for awhile... I need one. I feel so alone in this crazy tale I got stuck living.

[pecan]

Also I didn't see anything pertaining to that 8% error rate you mentioned- I looked at the link you sent. I have already been all over that website and others, years ago- I have been researching this all for years online. I am familiar with what they say the accuracy rates are for Western and for IgG it has been written in a lot of places that the igG tests are 100 percent accurate for negatives.

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

 

I understand if you don't want to talk about it anymore because trust me, I wish I didn't have to but I am stuck with it.

 

 

[tiredandlonely]

From the abstract: Compared with the UW WB as the criterion standard, EIA was 70.2% sensitive and 91.6% specific for HSV-1, and 91.9% sensitive and 57.4% specific for HSV-2. 

 

Sensitivity = the ability of the test to truly identify those with the disease. 

Specificity = the ability of the test to truly identify those without the disease.

 

The key point here is the 91.9% sensitivity of the test - that is where the quoted 92% "accuracy" comes from. 

 

The low specificity in this case essentially means that there could be a higher chance of a false positive test result (which isn't applicable to you because your results have been negative). 

 

The website you linked to says "a recent study corroborates this finding...100% of the labs using gG-based tests accurately reported that the blood sample was negative for HSV-2." But there is no reference anywhere on that site to the actual study.

I  have a problem with this because it gives no information about the study and there are a lot of factors I would want to consider before accepting the results. For instance: How many blood samples were tested in that study (a low number reduces statistical confidence in the results)? When was the study performed? What was the reference used to confirm positive/negative samples? Was it peer reviewed? Who paid for the study (a potential indicator of bias)? 

 

I found one 510k filing (what a company files with the FDA for clearance of a medical device) where they used Western Blot as a comparison: https://www.accessdata.fda.gov/cdrh_docs/reviews/K033106.pdf

 

If you look at page 7 where they summarize their clinical studies, you will see that the "% negative agreement negative to WB" is 92.07%. This means that the IgG test missed 8% of the HSV-2 positive samples. 

 

In any case, I said in my first post that I thought you could choose to believe the negative IgG results and no one would fault you for this. I reiterated this sentiment in my last post. You seem to want to convince me that you don't have HSV-2 based on things you've read online, but I'm not telling you that you have HSV-2. I'm telling you what I would do, personally, in your situation. 

 

I think if you advocate for yourself and find a doctor you can trust and who will listen to you/take you seriously, that you should be able to get the WB ordered if that is what you want.

 

I know you don't want to be referred to Terri Warren, but wanted to mention that through her website, you can actually pay her to order the test for you. Then you wouldn't have to find a local doctor to order it for you. I am only mentioning this because it's a resource that would require less searching and less mental effort on your part. I do think it is possible to find a doctor locally, but like I said - you will need to advocate for yourself.

 

Lastly, you are only stuck in this situation if you want to be. You can choose one of the following:

 

- Believe the negative IgG results and move on with your life

- Get the WB, believe the result of that test, and move on with your life

 

We don't get to choose the awful shit that happens to us. But awful shit does happen to everyone.  Everyone on this forum has at least one permanent STD. We are all learning to cope.

 

You can let this bury you, or you can embrace the good things in your life, learn to love yourself, and demand more. STDs do not make you damaged or unworthy of love. I am in the best relationship of my life, and I met my husband after I was diagnosed with HSV-2. 

 

You can stay angry, and your feelings will always be valid, but what is the anger doing for you? It's not hurting the doctors who let you down or the ex who betrayed you; it's only hurting you. 

 

[pecan]

 I am sorry that I do not handle it better, you are right. If others can do it then so should I I'm sorry. I am an abuse survivor and also live with ptsd I am sorry I do not handle it better. I have a lot of anxiety and it comes off as bad I am sorryThanks for the answers.

[tiredandlonely]

I'm very sorry for what you have gone through. I have suffered from anxiety and depression for over a decade, following several traumatic events that occurred in my life. I have spent a lot of time unhappy and angry, too..

It is okay to ask for help and it is okay to commiserate and look for empathy. It is okay to feel sad and angry. I'm trying to encourage you to fight for your own happiness, though. It is *terrible* that you had to suffer from abuse and that you experience PTSD. But these things can make you stronger, and the fact that you are on here, looking for help, means that you are resilient and want to get better. 

I think you can. You just need to pull yourself back from getting lost in the weeds. I know this because I have spent YEARS of my lie lost in the weeds 🙂

It seems to me like you are fixating on whether or not you have HSV-2 and you are struggling to cope. I don't think it has as much to do with the science and the statistics about the accuracy of tests, but with a general anxiety around the things that have happened to you and accepting things as they are in your life.

I don't know if you have tried therapy, and I also know that if/when someone decides to try therapy, you need to find the right person to work with. I've been in and out of therapy for many years, and I have had therapists who helped me and therapists I couldn't get away from fast enough. But if you have the endurance to find someone you connect with, it can be so helpful to unload your worries, get perspective, and work on yourself in a safe, compassionate way. 

Don't be angry at yourself for not doing "better." But if you want to feel better and .be happier, try to focus on the positive things. Try to find ways to deal with anxiety (honestly, I did A LOT - diet, exercise, socialization, cognitive behavioral therapy, etc. but also had to eventually go on a very low dose of an SSRI, and combined with the other changes, it made such a difference in my ability to cope). 

What works for me might not work for you. But I get so frustrated and passionate about fighting for yourself because I was unhappy for so long. I want you to know that there is a better way and that you can have a life that brings you joy, even if you also have to experience pain. 

 

[New2GH]

@pecan, Hi pecan, I don't think it's anyone's place to tell you how you should or should not be handling this nor should anyone be sizing up how you handle the virus versus how anyone else handles the virus.  Herpes affects us all differently (both emotionally and physically) and sometimes forums such as these are the only outlet we've got.  I think some people just don't want to hear such a somber reality when it comes to the virus and instead are bent on keeping things light and fluffy to suit their needs.  I think you have a right to express yourself and be heard and not be made to feel like you've got issues with getting a grip.  So please don't apologize.  You are going through a lot and have other things you are dealing with to add to the mix (like many of us do).  So as long as you are not violating this forum's guidelines then post away without apologies of any kind.  Lots of people read posts on this site daily and you never know when your story can help someone else.  I do hope you will be able to get the western blot issue sorted out somehow even if it means shopping around for a doctor that will listen to you and order the test.  Sending you some positive vibes and just know that your story matters and that you should be able to tell it the way you want to.  

[Ishmael]

On 6/23/2019 at 5:38 PM, tiredandlonely said:

The Western Blot looks for all antibodies/proteins associated with HSV-2, not just IgG. 

The IgG test can miss HSV-2 if your IgG levels are low, but since a Western Blot checks everything, it's less likely to miss an infection. 

Western Blot is over 99% accurate for HSV-2. IgG is about 92% accurate. 

17 years is a long time and it is possible that the results were filed incorrectly/not stored properly; especially with the switch to electronic medical records over that time period. Likely all records were scanned in, and they might have missed this. I would be really skeptical that the test wasn't performed at all because you paid for it and your doctor reported a result to you. 

IgG misses about 8% of HSV-2 cases. It's possible that your body just doesn't produce enough IgG antibodies to be detectable on the test. If you're in this 8% of people who don't test positive on IgG,  it wouldn't matter how many tests you have; your body isn't producing those antibodies so they won't be detected.

I'm really sorry you're in this situation because it must be so frustrating and confusing.  I think you have a choice to make: you can believe the negative IgG test, which is 92% accurate, or you can repeat the Western Blot through a more reliable healthcare provider.

If I were in your position, I'd probably just go ahead and get the Western Blot again because I would want to know. I think it's a waste of time to continue with the IgG testing. If the WB is negative, you can move forward knowing you don't have HSV-2 and that your doctor 17 years ago made a mistake. 

However,  you can also believe the negative IgG test, with 92% certainty. I don't think anyone would fault you for this. 

It's better than 92% certainty because they took the test three times, so it's 92% on each test. The chances of getting three false negatives in a row is very small.