[Question #7133] HSV Western Blot Clarity

8 months ago

    • Hi Terri,
      I have a few questions about the HSV Western blot. I had ordered one of these through you back in 2017, coming up negative 24 weeks after possible exposure.
      My symptoms started a few days after protective intercourse. My post history tells it all. I am still dealing with issues and have had different treatments and diagnosis - vulvodynia and pudendal nerve irritation. Many meds and even surgery. 
      So onto my questions. I recently saw a new internist to establish myself as a patient. I let him know everything about my past issues and my testing, as well as the Western blot. While he didn’t think my persistent issues are due to an STI, he did comment that testing via blood is pointless for HSV. His specific comment was that some people do not develop antibodies or that antibodies go away, therefore the blood test wouldn’t tell us anything. He was not familiar with the Western blot really and said I wasted my money because I would never know my true status without a sore to swab. I explained what I knew about the test, that it looks for multiple antibodies and not just one like the IgG. That it picks up over 99% of HSV2 infections. He still sort of brushed it off. He even thought the IgG was pointless. This of course was all hard to hear.

      So…
      1. Is anything he is saying true?
      2. Do antibodies go away with a new or long-standing infection?
      3. Could some people not develop antibodies? Any reason why? 

      For the most part, I’ve come to accept that my issues might have been triggered by something sexually related but the sex wasn’t necessarily the cause. Still, his flippant response to testing has me questioning and that is something I didn’t want to do. 


      Just a note I did post this on the Westover site before I remember my previous messages where here. I wanted to keep them all on one platforms 


Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
8 months ago
Is this physician an infectious disease expert in herpes, an expert in sexually transmitted infections? Does he have articles about herpes published in professional journals like the New England Journal, Lancet, Journal of Infectious Disease, JAMA?  Is he a principal investigator on clinical trials of herpes diagnostics, treatments, and vaccines? Does he have 35 years of practice, specializing in herpes infection?  Is he called upon to testify in court about herpes cases?   I seriously doubt that.  But I am all of that.  And he is not up to date on herpes.

I'm so sorry this happened to you but clearly this physician is not aware of the blot, nor the CDC recommendations regarding its use nor the fact that it is considered the gold standard for entry into any clinical trial for herpes.  And your story is not uncommon. Many physicians and other providers are not aware of this test and are undereducated about herpes in general.  I think because herpes does not normally cause any long term medical problems like other STI's can, continued education about herpes is often not offered or when offered, is not taken.  It is a shame, especially for people like you who had peace of mind and now might not.  Please - read the CDC guidelines for yourself and print them out for him.  If he purports to know more about herpes than the CDC, something is clearly wrong here.

Antibody going away is called seroreversion.  It can happen rarely with the IgG test but never with the western blot.  The IgG test misses 8% of HSV 2 infections compared to the gold standard western blot

In my 35 years of experience, I have had 11 patients who had positive swab tests but were negative on the western blot.

I hope this provides you with some reassurance.  This physician is sharing incorrect information with you and could be with other patients.  He would benefit from you printing out information about the western blot and the CDC treatment guidelines.

Terri
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8 months ago
Thank you so much for the reply, Terri! 
I really appreciate you and your knowledge. When I went through my medical history with him, I wanted to cover everything because I have had ongoing issues. When he made the comment about testing via blood, it totally threw me for a loop. 
I know that it is the CDC recommendation to not screen the general public, something I wholeheartedly disagree with if someone has had multiple partners, but I would assume most practitioners would be aware of the basics. I actually felt kind of stupid. Not that I believed him, it was just the way he made me feel. 
Of course as soon as I got home, I started investigating and found next to nothing that would validate anything he said. The only mention of antibodies disappearing I found was from the link below, a sexual health organization in Australia:

All the information in the above link seems kind of dated itself.
I definitely wanted to check in with you because I know that you have studied HSV extensively and would know, not only how the virus works but the benefit and shortcomings of the testing available. 
It has been difficult to let go of my worry of being misdiagnosed. It all stems from the timing, a few days after intercourse, when my issues started. After seeing multiple specialists, I came to a place where I felt more confident. No root cause has been found but as my doctor say, we may never know. It could be something as simple as a nerve being irritated from movement, a bacteria, anything under the sun. And that irritation could’ve caused things to go haywire, resulting in skin symptoms and daily discomfort. 
But then of course… I see a doctor who  throws a wrench in everything. I’ve already printed out the CDC guidelines and will be printing out this conversation, the herpes handbook from your website and the information I have on the Blot. I will be dropping those off at his office this week. I don’t know if he will read them or even care, but when selecting doctors you need people on your side. And I can’t have somebody who doesn’t know what the hell they’re talking about when it comes to my personal testing and possibly a similar situation for other patients. 
I will follow up should I have any other questions but thank you so much for the reassurance. I am going to move forward knowing that I don’t have to worry about antibodies disappearing or not showing or being misdiagnosed. It’s a rabbit hole that’s hard to not fall down. Thank you so much!
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
8 months ago
If you want a further relationship with him, I'm not sure you want to print out this conversation with me.  But your call.
What the CDC says about herpes antibody testing is that if someone presents for a complete STD screening, HSV antibody testing should be considered.
I'm glad that you feel reassured.  Sometimes it's hard to let worries go, I understand that very well. 
I'm sure you can also find some studies about the differences between the IgG test and the western blot at PubMed.
You hang in there, you are doing just fine.

Terri
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8 months ago
You’re right. Presenting this conversation with him probably wouldn’t be a good idea. I don’t know if I will stay with him given how I felt when leaving his office but will see how I feel after I see him again during our follow-up next week (going over results from my standard blood work up). 
But I definitely will discuss and give him information I printed out. How disheartening that more medical professionals don’t, or won’t, keep informed about an STI that is so common. It may not be considered life threatening but it can be extremely life altering. Brushing it off as no big deal, minimizes the emotional and often physical symptoms. I had no idea that this was not tested for regularly. I really wish, in all my years, one of the doctors I have seen would have said something when I would go for my yearly test. Surely most people who become infected, do so after being with someone who has no clue they have it. Since the majority have no clue that they’re infected, even if they’re doing everything right with protection, they can ended up hurting someone they care for unintentionally. 
If more people knew, if more doctors offered up testing as an option and properly educated their patients (that wouldn’t be difficult) it might do a world of good for the stigma. People, patients, count on or expect doctors to know everything. That’s not fair, of course. But with a few basics, people could take better hold of their sexual health and know they can turn to their doctors for accurate information. 
Now I am just waxing on with my opinion. This whole thing has been such an eye-opener. Not some thing I’ll be able to shake totally probably ever. But with all I have learned, I’m definitely sharing it.
Not that you’re not totally awesome Terri, but I really hope I won’t be back with more questions. Life stands still when you can’t make sense of things. I’m tired of two steps forward, three steps back. Chronic issues aside, I need to keep moving forward. Thank you so much! I appreciate your help more than you will ever know! Thank you for being an advocate for knowledge and research and for helping us so much. All the best! 
Terri Warren, RN, Nurse Practitioner
Terri Warren, RN, Nurse Practitioner
8 months ago
Thank you for those very kind words, Kristen.  I think one way this could get better is if we had better testing.  Some clinicians are worried about false positives on this test, and we know they are there.  They are primarily in the low positive range but there are some in the higher positive range as well.  I always order western blots for people who have low positive values, per the CDC recommendation.  But if someone has a higher positive but has never had any symptoms, I may also order it for them as well.  Not everyone can afford it.  But the reality is that people are going to continue to use the IgG test, albeit flawed.  The trick is knowing who to confirm and who not to confirm and how to get it done.  I so hope in my lifetime, we get a better test. 
You are doing really well, Kristen, you have good insight and you are pro-active.  I dare say you know more than your doc about genital herpes. 

Terri
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