A very long herpes (or not?) tale.

[pecan]

Hey guys. I have a long tale, that I'll thank anyone ahead of time for actually staying and reading the entire saga.  It is complicated. I wish it was simple, but it isn't.

You may recall me from awhile back when I was trying to sort out if I actually have hsv 2 or not. I had (supposedly) a Western Blot years ago that I was told was positive. At the time I was having symptoms due to HPV warts- and my Dr at the time said that itching was absolutely not a symptom of my warts and suggested I be tested with a (then) obscure test not covered by insurance (over 15 years ago Western Blot was unheard of). So I did it, and she told me I had HSV 1 and 2. In addition to HPV warts. Yay. Also it should be noted that this particular gyne seemed to think none of it was a big deal despite the fact I was melting down because here I was being diagnosed with two permanent std's and I could barely handle it mentally/emotionally. One would have been plenty. I stopped seeing her because I did not like her flippant attitude towards things- when I asked her if I had to tell people I was hsv-2 positive despite never having an outbreak, she simply replied, "That's up to you". And also it should be noted that I never, absolutely never- had sex without a condom.

 

I had gotten cold sores forever, but never, not to this day- a classic outbreak down below. Mystery itches and what nots, but nothing like a classic symptom down below. Years later, I decided to test again with my GP- it was an igG test- and it came back positive for hsv 1 and NEGATIVE for hsv 2. I was basically jumping for joy over being negative-and then mentioned I'd had this Western Blot in the past- and then my GP said that I somehow still had it then, despite my more recent test being negative, the kind that DOES differentiate between type 1 and 2.

 

Ok then, still no outbreak and it was 7 years later and I now had a test that says I am negative for type 2 hsv. An igG test (yes, I am positive it was NOT an igM).

 

So years later, I am in a relationship and I have told my potential partner that I have hpv and both strains of herpes. And just for the heck of it, get tested with my GP again- still no outbreaks down below, but I have had mystery symptoms of an occasional burn or itch and no clear answers from the gyne I have had since after the original hsv diagnosing gyne. My partner accepts all I have told him (we have no sex life anyway) and I get tested again with my gp, the same test, an igG (I believe an Elisa) and AGAIN I am positive for hsv-1 and NEGATIVE for hsv-2. and now it is 15 years later after the original diagnosis via supposed Western Blot.

 

I say "supposed" because, the original gyne that told me I'd had the Western Blot (she'd explained it was in Washington, insurance didn't cover it and I had to pay out of pocket)-  has turned out to be questionable in my opinion. And here's why- granted, many years later- I asked her for all my records including, and ESPECIALLY, the Western Blot results. Because I found it to be quite curious that I now have TWO igG tests saying I am negative for hsv-2. TWO.

 

Her office told me that they would get my records. Sometime later, I get a call that they have my records. I call back to get them- and they have "lost" my records. I wait, follow up, wait, follow up, speak with staff and receptionists- get fast talked, put on hold, told they are "looking" for my records- for TWO ENTIRE YEARS. In the meantime, while I have had it up to here with the whole situation, I pay for and ask Terri Warren of the Westover Heights forum- what she thinks, and also voice my great dissatisfaction with my old gyne and also my opinion that non symptomatic people should not be tested. I know it has made my life very complicated and induced much anxiety and depression.

 

Terri assured me that no matter what, if the Western Blot was positive- I have hsv-2 and even went so far as to say that I should be grateful for having such a forward thinking gyne back then to have given me the Western Blot. Obviously I feel quite differently. I also brought up the question of, "Well, if I definitely have hsv-2, yet tested negative TWICE for it with igG tests- then that begs the question of the validity of these tests". Not to mention, maybe I have been rejected by potential partners who have hsv-2 but still turn up negative on igG testing as I seem to. Terri did not address those questions/points.

 

At this point I was still asking about my Western Blot results from the original gyne. Because I really need to see them with my own eyes, after testing TWICE as negative with reliable igG tests that are the standard for anyone getting tested for both types of herpes. I am polite and patient the entire time. Eventually I am told they found my records- but now I need to send a signature and a check to pay for them. Fine. My boyfriend writes them a check and I give them the signature- and still-nothing. Except, a phone call from her office- asking who wrote the check- because my boyfriend did- and a bunch of suspicion and questions about who he is and why did he write the check for me? And more questions about "Who is this person that wrote the check?"

 

Finally, she sends me some records- a bunch of stuff-and NO Western Blot to be found. I call, again, and ask-again- where are my definitive Western Blot test Results- the ones she diagnosed me with having hsv-2 with- years ago? And they know who I am because I have waited two years for results- and at this point, I am being fast talked- about how herpes can "hide", and a lot of details about the records I did receive, but still nothing to do with my Western Blot results which are nowhere in my records- then put on hold- then transferred to the lab where I request another Western Blot and am told that I will be called back with the details. Mind you, at this point the Western blot is near impossible to acquire.

 

So I wait and wait and receive no call back- and then I call gain. And the actual Dr, my old gyne from years and years back- gets on the phone (at this point I am so sick of the entire thing, after TWO YEARS that my patience is finally wearing thin, and I am upset)- and tells me to call back when I have calmed down. AFTER TWO YEARS OF WAITING FOR MY MEDICAL RECORDS and questioning about my check, and years of being put on hold, and checking into see if they found my results, etc.

 

Ultimately, this gyne gets impatient with me. Impatient with ME after I have waited TWO entire years for my results for a permanent std- and followed up, and called and checked in, and written a check (which inexplicably, they never cashed)- and tells me that "Well then, you didn't get the Western Blot here".

 

Well, as you might know- there is absolutely NO WAY I would have gotten that test anywhere else- because I most certainly remember the Dr who told me, with a then obscure test- that I had not one, but TWO permanent std's. I could not believe what I was hearing form this woman. She then went on to tell me that I should just go ahead and call the University of Washington for my records.

 

And I thought, "OMG. WHY didn't she just tell me that TWO YEARS AGO?". And I call. And they tell me they only hold records for 7 years.

 

And now, I have two negative igG tests, nothing else on record- and no classic outbreak, EVER. And I am so, so tired of the whole thing- and I have to make this my final relationship with current partner because I cannot take this mental head game anymore of not knowing what to tell people and having this insane tale.

 

So that's my story (and it's never a simple one in my life, I swear- I pray for simplicity and it evades me).

Thoughts? I mean I think old gyne lied and pocketed the out of pocket Western Blot money- did some other tests and decided I have hsv 1 AND hsv-2 and that's exactly what my new, new gyne said too, when I gave her a brief synopsis of this story.

 

I don't want another Western Blot, or HSV test of any kind. I have TWO negative IgG tests and I have had all the stress and more that I can take over this. And granted, no, herpes is not a life ending thing- but all the back and forth, and positive, then negative results- and multiple std's (hpv warts) is really a bit much. Even though it was a long time ago, I have had to deal with the whole, weird thing.

 

And I am in tears now, because the stress this entire bizarre scenario that has dragged on for years has caused has gotten to me, I suppose.

 

And thank you so much for staying with me this far.

 

 

[SeraLyn]

I read the whole thing.... This is insane, I'm sorry/angry/pissed for you.  🤬 

I don't know if it appropriate to ask in this forum, however have you looked into legal action against that doctor or the office? I don't think it's legal you pay for a test you didn't receive (nor can get records of) not to mention the two years trying to get your records. 

You are fortunate to have a partner that is supporting and sticking with you though all this drama.  I hope through all this you find some peace, at least some sense of security that your are okay.

[pecan]

Thanks for reading! I would love to do that, but I have no records of her so called Western Blot. For years, I had the receipt from a money order for the supposed Western Blot. And I can't find it. I just for the life of me cannot fathom why, how, I can test negative twice, not even once but twice on an igG test- if I supposedly had a "gold standard" Western Blot test. Because no matter how long afterwards, I should still be testing positive. I always test positive for hsv-1 and I have cold sores, which I hate- so that makes plenty of sense. So the igG ALWAYS picks up the hsv-1. But I have two negative results for hsv-2.

 

There's been no sense of peace in my life for years over this.

 

And let's just be nuts and say I did actually have a positive Western B;lot years ago- well why then would I test negative twice with the same igG tests that anyone else gets when they go in and get tested?

 

That would mean that a lot of other people are positive "for real" and then test negative- years and years later- this isn't a window period thing or anything. That would mean that all these tests are useless. I was tested  about 7 years after initial supposed Western Blot and again 8 years later.