Never had symptoms, +HSV1 test, ?HSV2 test

[CaptainsMom]

I have MS. I took Zinbryta in January and was hospitalized following a bout with the flu that turned into pneumonia so my next injection was to be March 4. When it didn’t arrive, I learned it was pulled from the market March 2 bc of dormant viruses being rectivated, and people dying from encephalitis. I got shingles, UTIs that wouldn’t go away, thrush and yeast infections from antibiotics. I did some research and found that the UTI symptoms (urethral pain and painful ruination) and yeast infection symptoms could also be signs of herpes. I thought thrush could be oral herpes! I also found a “bump” between my urethra and vagina. So I asked my pcp to order the test. HSV1 was positive at
33.3 on IgG and HSV2 was positive at 1.12 on IgG. I had my pcp, gyn, and dermatologist check me and all three said they saw nothing. I went back to gyn with selfies on the area with the “bump” circled, and learned it was a gland that secretes lubrication. She confirmed this with examination. She said the CDC recommends not having this test bc of the psychological stress it causes, and it did cause stress. I then went to infectious disease Dr and he said I had just had a positive test…”big deal…you’re paranoid.” He said “most everybody has a positive test…doesn’t mean you have herpes.” Gyn said I had no symptoms, but would give me valtrex for suppression. On my second visit, she told me there was no need to take it. Question: Do I even have hav1 or HSV2? Never, ever had a symptom of either. These things I googled were explained by other conditions by pcp, neurologists and gyn. Thank you.

[Terri Warren]

I actually don’t think that doing the antibody test was a mistake given your concerns and the situation in which you found yourself with this drug being pulled from the market. You certainly do have HSV one infection as indicated by this test but the HSV-2 value is very low but nonetheless positive. The Center for disease control recommends that anyone testing in this range obtain a confirmatory test and the best is the herpes of Western blot. Perhaps you can work with one of these two providers to obtain this test and if not, I can work with you to be the ordering provider as we are conducting a study looking at the sensitivity and specificity of the IgG test compared to the gold standard Western blot. The responses that you have had so far from these two doctors indicate a lack of understanding of the details of herpes antibody testing. Please don’t be concerned that you have done a wrong thing bye testing but now we just need to get a clear answer since you’re result was in the low positive range. You just need to walk-through more steps to determine your actual herpes status

Terri.

[CaptainsMom]

I had nothing concerning after my first post until July 3. There was blood on tissue after urinating and it was very painful. Went to urologist. Confirmed blood in urine. Saw nothing to suspect herpes. Gave me 7-day round of keflex and it knocked it out.
Today, same thing. I took selfies. Can you look at them? If so, how do I send them? Initially, I was offered valtrex to take daily and then gyno and infectious disease said not to take them bc the hsv-1 was high, I had no oral symptoms, and the hsv-2 was so low they wouldn’t even consider it positive in the absence of symptoms. Bottom line, my dx was “exposure to hsv.” Will you tell me how to send pictures and you take a lot ok at them? What concerns me is visible in the pictures. I’ve been told it was a gland that lubricates and irritation. But I have a positive test. It has to be somewhere, but why now? Married 16 years and never cheated and neither ever had symptoms until this. Please help!!

[Terri Warren]

Sorry, I am unable to look at your pictures. I would strongly suggest as I have in previous posts that you obtain the herpes Western blot per the Center for disease control STD treatment guidelines it absolutely shocks me that your infectious disease physician told you that almost everyone test positive for HSV-2. That is completely not true. And if the index value represents a true positive, which is very unlikely, it does not mean they have been exposed to the virus only, it means that you are infected and potentially infectious to others. But at your index level, there is an 85% chance this is a false positive.

Terri

[CaptainsMom]

Need to clarify something bc it looks like I threw my doctor under the bus…he said most everyone (he said about 80%) has been exposed to HSV-1 and that was what he based his dx of “exposure to HSV” on. He said the HSV-2 was so low that it wasn’t even considered positive in his experience…gyno said less than 3 nothing to worry about.

Here we are less than three weeks later and I have this one little “thing” (which truly doesn’t look like a lesion based on all the pictures I’ve seen) again in the same place and it’s driving me crazy. I’ve been told by four different providers now that it’s “just irritation” and it doesn’t respond to valtrex or Zovirax. What could it possibly be? I know you can’t dx via internet, and no one could without seeing it, but I believe there’s more to it than just “irritation”, especially since it’s now coming and going like a period. I’m 55 and had a complete hysterectomy at 29. Could this be hormonal? Have you ever heard of anything like this? What are other possibilities? I’d really like to go to the gyno again (ugghhh! It will be the 4th time to go to her with this!) and tell her what my suspicions are, but I’m almost embarrassed to bc she’s reassured me I have nothing that resembles HSV1 or 2, even though I had high HSV-1 test, and came in at 1.12 on HSV-2 IgG Test, but never any symptoms. Could it just be that the Zinbryta has done more of a number on me than I thought by deactivating a dormant virus? I’m stressed out, embarrassed, totally confused and at my wit’s end!

[Terri Warren]

I doubt that the bump has anything to do with the medicine you’ve taken. Are you able to get in to see your doctor when the “thing” is there? You could ask for a herpes swab test, just to reassure yourself. Your doctor is sharing a lot of misinformation with you, honestly. About 48% of the US population has HSV 1 and about 15% have HSV 2. And lots of people have index values less than 3 that are truly infected. Are you not going to consider following the CDC guidelines and getting a confirmatory test like the western blot?

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Terri

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