Highest levels ever encountered

[bebhinn1975]

I had an STI panel that included HSV1&2 IgG and IgM tests done by a blood draw.

My index values came back very high. Almost 300. I’m unsure of the test used, and my sample was sent out of state for processing. I made an appointment with the clinician who ordered the panel and she was worse than useless. Would not let me finish when I talked about my concerns with the IgG results. I was there to ask for follow-ups to confirm and she became very fragile and aggressive when I questioned the results. My IgM results came back non-reactive. IgG for HSVII returned in a range that’s not in typical report for for these anti-body tests (or I don’t understand the reference ranges).

Because I cannot return to the obnoxious APRN that ordered the labs due to her inability to understand why this would be highly upsetting, I have reached out to Terri Warren to start the process of getting a WBT to confirm the positive/reactive tests.
Terri states that she’s never seen such a high result for an AB test, and that the lab result is either wildly inaccurate, or that a blot test will come back very positive.
Waiting on the kit to arrive from Washington and will make a telehealth visit with her to get the requisition sent over.

I’m trying to remain hopeful that this isn’t the end of everything I know but with these off the chart values, I have so much anxiety that I’m paralyzed. I keep reminding myself that I can’t overthink it but it’s been a doozy to try and process.

Given how stressful this has been, what are some resources I can have on hand to help process a possible positive on a WBT?
I don’t trust anyone local after the way the APRN reacted to my concerns. I joined an online support group but apparently it’s just someone who is really selling a program. I’m not interested in buying programs. I either want to learn how to live with the changes this diagnosis brings, or I need to learn how to process the anger and rage from a misdiagnosis and having to deal with the emotional fallout from a very unprofessional nurse who dropped this in my lap and basically told me to —— off.

Symptom wise, I would say that I’ve never had a breakout, but reading up on that also confuses the heck out of me. Maybe I’ve had many breakouts and just didn’t know it?

If anyone can point me in the direction of some sort of support network I’d be so ever grateful. I feel alone and alienated from seeking help locally.

Thank you

[auntiejessi]

So first, I agree totally with Terri - not that I'd really ever dare to disagree lol - but I've never seen a herpes test with results that high. If Terri hasn't, I sure wouldn't.

I don't know of any support groups that would really fit right now. I know of some on Reddit, and some that started on Reddit but are now on Discord, but you do have to have a confirmed positive, and right now, I'm not sure you do.

I can tell you that if it is an accurate result, all it means is that your body has a really strong immune reaction, and not that you have a really bad case of herpes, or that it indicates in any way that you'll get more outbreaks, or be more transmissible, or whatever you might be thinking.

If I test tomorrow (and I have hsv2), and get a 12.74, and you get a confirmed WB, we'd have the same level of transmissibility, the same chance for # of outbreaks, etc.

I can also absolutely promise you that if you do have it, life as you know it is NOT over. My allergies and migraines bother me far more than herpes ever has.

So hang in there. You can ask me any question you want, and I'll do my best to answer. Terri wrote a great book called the Herpes Handbook. It's free, easy to read, and you can read it on any device - https://westoverheights.com/herpes/the-updated-herpes-handbook/

Seriously, ask me anything. :)

[bebhinn1975]

Thank you.

I commented on this and I don’t know if it disappeared or what.

I had a question about the lab values/reference ranges but it doesn’t seem to be here now.

I’ll wait to follow up on the blot test and go from there.

[auntiejessi]

If you took the IgG in the US, it's usually anything about a 1.10 is a positive, but anything between a 1.10 and 3.5 needs to be confirmed.

I'd be interested to see the reference ranges for your test. Are they printed on your results?

[bebhinn1975]

Yes, but they don’t come in the regular ranges normally described.
Basically the non-reactive value is anything below 1.000 and reactive is anything over 1.000. I’m currently 295 times higher than the value of 1. That’s HSV2. HSV1 holds the same reference numbers and I’m 35 times higher per their index values.
There isn’t any other numbers for the 1&2 strains and there doesn’t appear to be an index that would tell you that you were negative, equivocal, or positive with a reference that indicates a low positive. The result is just flagged with H for high. It doesn’t appear to come with a reflex for confirmation testing. That’s for the IgG immunoglobulin test I guess?
No idea what test they are using. I just know IgG levels came back very elevated and that they did an IgM test with ranges that make more sense. Negative on the IgM. (0.40)

When I asked for explanation by the provider that ordered the labs, she just said that my infection was long standing and that with no current breakouts, antivirals wouldn’t be given. When I asked her what that 295.000 value would equate to in the normal range of negative, equivocal, or positive she just said that the lab didn’t run their ranges that way. I told her I had some concerns about the reliability of whatever test this lab runs and she flipped her lid. Kicked me out of her clinic after saying that I basically deserved the diagnosis because my partner came up positive with HPV and now I had herpes. She had no shame in throwing his non-monogamous label in my face.

It’s been extremely distressing and I’m taking all the steps to confirm or refute this shady blood test run somewhere in Texas with a blot test through the U of W.

[auntiejessi]

Oh nooo. I'm so sorry this happened to you.

First, let me address the "you deserved it" part. STIs are no different than any other infection. They are viruses or bacteria that act like any other viruses or bacteria, and they do their little biological thing and reproduce and spread. Just like if it were strep throat or covid or the flu, it's not a mark of shame, morals, or worth.

Pathogens are not able to determine if you help little old ladies carry their groceries, love puppies, or if it's your first partner or your 100th.

Also, HPV is human papillomavirus. It's the virus that causes genital warts and abnormal cells on your cervix. It is NOT what causes herpes. That's herpes simplex virus. This woman at your clinic is an idiot.

If you do have herpes, you might have had that prior to your current non-monogamous partner, or you might have gotten it from him. She doesn't know that. You don't know it. If he tests positive, you'll never know who got it first, or if you both came into the relationship with it.

So ending that rant, they probably wouldn't run a confirmatory test with high positive numbers. If you wanted to, while you wait for the WB, you could get another IgG through a company like STDcheck.com or LetsGetChecked.com, but the issue comes in that labs don't always let the test run to completion once they have a clear positive. (There are lots of sites online where you can get these tests done - these are two that I know will give you index values - not all of them do.)

For example, if they notice it's at a 14, they might stop it, and you wouldn't know if it's actually a 295.

I have seen results in the 30s, though. That's not unusual. If you decide to get another IgG, just get an hsv2 test. You don't need an hsv1 test.

You don't need an IgM. That test is unreliable, and shouldn't be used. It's wrong almost as often as it's right.

Also, you don't only need an antiviral for outbreaks. We've known since at least 2004 that antivirals help reduce transmission, and you shouldn't have to beg for them. Using antivirals for transmission reduction is a valid choice, and any clinician who tests for and treats STIs should know this.

I'm so sorry that you are going through this. It shouldn't happen like this.

[bebhinn1975]

Yes, I’ve debated getting an online test just to see what the numbers are. I still might. Idk. I think I’ll just save that money and put it toward a WBT.

While I understand that, say, a 30 is high, 30 is a long ways from 295.000. And she did admit that the lab runs their own ranges. Like I mentioned in my first post, Terri said it’s the highest she’s ever seen while also saying that the sample was run by a lab she’s never seen before.

I know that herpes is HSV and that we may have both entered into a relationship with it, or he gave it to me, or I might have given it to him… any combination of things could have occurred. Not sure if it matters much at the end. I either have it, or I don’t. Or something. It’s all very confusing and frustrating and I just want a blot that confirms or refutes the numbers assigned to the sample that was done.

The emotional fallout has been intense and is not helped by the cruel nature of the ordering  provider who is indeed a first class moron.
I know more about herpes in light of this than I ever wanted to know before it and it does not bode well for continued relationships or an active sex life on my part. There is so much conflicting information that I just can’t square up a choice to possibly infect someone else with or if I’m positive, or risk acquiring it if a WB does come back negative. I don’t even know if I have it at this point and the stress of just trying to figure out where to go in a state of limbo has been far more intense, and going forward with it without it doesn’t seem work the risk of transmission. Just my personal opinion and may depending on the result and my ability to process the outcome of this, I might change my mind.

That certainly won’t happen any time soon.

[bebhinn1975]

Herpes is NOT HPV*

[auntiejessi]

So first, let me dispel the myth that herpes will end your sex life or won't bode well for relationships.

I got hsv2 when I was in my mid 30s. I was in a serious, long term relationship. I knew he had it, took my chances, ended up with it. Relationship ended - not because of herpes, but for many other reasons.

In any case, in the many years since that has happened, only one man has declined to be with me, and he had a serious germ-phobia. I've tried using herpes to get men away from me, like, "omg you don't want me, I have herpes", and it does not work. I've had them say they don't care, and I've had them tell me, "oh I have it, too!" (That's happened so many times I can't count. Were they going to tell me? I don't know. That's a different story.)

I've also heard that their exes had it, and who cares, no big deal. One guy said, "Damn, everyone has that. Seriously, I think all women I date has it." Another said, "Cool, thanks for telling me. I'm really hungry. Can we go eat now?"

I'm nothing special. I'm a middle aged woman who could lose some weight. It definitely took a little time before I got comfortable sharing it, but now I no longer give a f***, and someone doesn't like me because of herpes, fine. If not herpes, it might be something else. I don't like a lot of them for a lot of reasons, so it's whatever at this point.

If you don't have it, now you're educated, and that will only serve to help you. You know about testing and treatment, and transmission, and  if you run into someone who has it, you're already in the know about it.

Waiting is the worst part of all of it. If you end up having it, then you start learning more and adjusting to it, maybe taking meds (which you can get online for not that much money - I can give you reputable sites should it come to that). If you don't, you move on from this better educated.

Oh and on hsv1 - if that's accurate, and it may be - 67% of the global population under 50 has that. The vast majority never get symptoms. Meds can help reduce transmission of that, too.

Hang in there, okay?

[bebhinn1975]

I hear you. It’s just very overwhelming at this point so future encounters/activity isn’t something I can focus on at the moment.

The HSV1 reactivity doesn’t surprise or worry me since I’m sure I’ve had that since I was a child. My mother always had cold sore outbreaks and I can’t remember the last time I had one. I’m familiar with the prodomes that come along with the mouth stuff, and I wouldn’t engage in anything if I had a sore(s).
The genital type is more confusing because I’ve never had one that I would think needed a check. Reading up on that has left me more confused about it as it seems you can have outbreaks that wouldn’t be recognized as such.
Or you can be asymptomatic and never know if you had it.

I did have something occur last November/December that seemed like it may have been something like ESV. Swollen lymph nodes in my neck and what felt like possible spleen involvement. I never followed up on it because it resolved itself and frankly, the health care here isn’t great. I’ve been ignored and gaslit over obvious issues. One was finally resolved and the other is benign and I’m followed by a specialist. Neither were in the sexual health department.

The mental aspect has been the hardest. I understand that there are ways forward if I’m confirmed with a blot test.
I’m feel like if physicians or other ordering practitioners are going to present this as an issue one is faced with, they should also come equipped with the skills to help a patient navigate all the aspects of it. Very disappointed in how that seems to be lacking in my case, and I do wonder how common it is.

[auntiejessi]

Do you mean EBV, Epstein-Barr Virus? That's also known as mononucleosis, or mono. Many people will get that in their lifetimes. Spleen involvement can happen with that.

Since you're mentioning that here, I'll say that EBV is in the herpes family of viruses - human herpesvirus 4 - but it's not a herpes simplex virus. Chickenpox, or varicella, is human herpesvirus 3. Depending on your age, you may have had chickenpox or been vaccinated for it.

The mental aspect of hsv can absolutely be the hardest, and uncertain test results and incompetent/uncaring healthcare providers don't help that at all.

1 in 6 people in the US has hsv2, and 50% of all new genital herpes infections are genital hsv1, but unfortunately, many of them deal with knowledgeable or unkind healthcare professionals. I see it here all the time. They order the wrong tests, they don't know how to interpret the tests they order, they don't know about Western Blots, they believe STIs are some kind of karmic punishments, they don't prescribe antivirals correctly - or at all, etc., etc. The CDC publishes STI Treatment Guidelines that outlines everything, and some doctors don't even know those exist. It's so frustrating.

To be fair, some primary care docs have to keep current on so many things - Covid, the flu, RSV, to name a few, but when they step out of the room after the exam, they can Google to see if there are any testing or treatment updates. They don't update all that often so they should be able to keep up.

You mentioned Texas. I don't know if that's where you live, but are you close to a big city? Bigger cities often have teaching hospitals with clinics that are more current on healthcare. If you don't have health insurance, or are under-insured, you might try the health department in a larger city, too. (You don't have to tell me where you live - just putting that out there for information.)

[bebhinn1975]

Yes, Epstein-Barr. Don’t know if I had it, I just know I felt very unwell last November and I had weird tenderness/shooting pain in my ULQ. I’ll never know as it’s passed now, and no guarantee that anyone I could have seen here would figure it out so it’s inconsequential. I had a very bad case of chicken pox in my older teen years. I missed close to 4 months of school.

I know that family care docs have to follow a lot of updates and it may not be on their priority list before they see a patient. It’s the patient that suffers and in my experience I’m very loath to see providers for this reason. I go when I absolutely have to and not a minute before then.

I don’t live in Texas but my sample was tested at a lab there.
My plan at the moment is to wait for the specimen kit from Washington, check with the lab to figure out how it gets back to Washington for confirmation testing. Then I’ll do a telehealth with Terri and wait for her to receive the results. Depending on the results, I’ll need to make a decision about who to follow-up with regarding medications if needed.

It’s one step at a time with a ton of stress and anxiety in between. I can’t go one way or another until or unless my results are confirmed. The attitude of the provider who ordered the labs does not make me want to extend trust to anyone else locally. If positive I’ll have to do it eventually. If it’s positive and I’m not having bothersome symptoms, I may do nothing with it until it becomes something I’m forced to deal with because it becomes harder for me to ignore, or I reach a point where I’m ready to enter a relationship or have sex or some such.

[auntiejessi]

Your non-monogamous partner - are you in a place with them that you can ask him about herpes testing?  I don't know what kind of relationship that is, if you feel comfortable asking that, or sharing this info, how long you've been seeing him. I don't even know if his test results would help clear yours up at all but it might be a start if you feel comfortable talking to him about it.

If not, that's okay.

For all of it, take it a day at a time. The last I heard, which was a few months ago, WB results were taking a few weeks. You still have a bit of time to wait on this, unfortunately. :(

[bebhinn1975]

We both went for testing and came back neg for panels for everything else. Mine only showed positive for HSV. His did not include HSV1&2 testing. He said he would go but I think he might be waiting to see what my blot does. Which makes sense due to all the problems with the IgG blood test preformed commercially. If I had known any of this before it came back positive outside of known outbreaks, I wouldn’t have done mine either. It’s made me a neurotic mess and it’s an unjust thing to do to anyone unless you are prepared to help the patient with the pitfalls and are educated enough in it to respond to further questions or requests for confirmation testing. Our interactions are very casual and have mostly been fine outside of this bs.

[auntiejessi]

"it’s an unjust thing to do to anyone unless you are prepared to help the patient with the pitfalls and are educated enough in it to respond to further questions or requests for confirmation testing"

I wholeheartedly agree with this. I'm so happy you found Terri on your own, because she's the best and that's who I would have referred you to.

Hang in there, and keep me posted as things happen, or if you have questions. Go do something fun this weekend and try to keep your mind off this as much as possible.

[bebhinn1975]

Thank you again. Found out the partner talked to his doc about a HSV test and was told they don’t do screening tests because they are so inaccurate. Between the two of us at least on of the providers is educated enough to know about the problem with arbitrarily screening for it.

I will let you know what a blot reveals once the results are returned.

[auntiejessi]

They are really inaccurate. The hsv1 test misses a full 30% of infections. The hsv2 test misses 8%.

The hsv2 test has a good number of false positives, usually results between 1.10 and 3.5, though I've seen results in the teens be false positives.

I've never seen a result of 295, so I can't even begin to address that. I don't know if it's accurate, if the machine needed to be calibrated or something, or what.

I'll be looking forward to your results, and hope you're doing well in the meantime. :)