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Subject: "my letter to the experts"     Previous Topic | Next Topic
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bob12
Member since May-15-12
44 posts
Apr-24-13, 09:30 AM (CST)
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"my letter to the experts"
 
   I sent this to several of the HSV experts I talked to during my mess.

I don't know if you remember me? We talked several times. I had very atypical symptoms, 13 negative IgG HerpeSelect tests over a year (always lower than 0.48), a negative Western Blot at 4 months, and a positive swab for HSV1.

I've since met several people with positive swabs, atypical symptoms and negative blood tests. I feel like I have insight to give and I hope you'll hear me out.

You've probably seen the study where Epstein-Barr and VZV antibodies neutralized HSV infection in rabbits?

http://www.ncbi.nlm.nih.gov/pubmed/3029407

It's my impression that in atypical cases that swab positive, yet never have positive blood tests, it's probably a shared response from the immune system over shared virus proteins such as those for Epstein-Barr or VZV.

The Timeline for Seroconversion for HerpeSelect study also shows a dismal positivity rate by 6 months for non-primary HSV2 infection (73%). I feel the theory holds water here as well since HSV1 and HSV2 have some similiar shared proteins. If the body already has an antibody for many of the HSV2 proteins, it's possibly it would use that.

About me, I have a killer immune system, to the point where doctors have been concerned about procedures for me because of my immune response.

I feel the low-level irritation people with atypical cases of herpes have is not neuralgia, but a histamine response by the immune system due to an incomplete but adequate antibody response. I've mentioned to people that Benadryl will often, but not always, tame the irritation. People always respond that it's not herpes then, well, that's what I have.

The person I got HSV1 from was swabbed positive during a classic outbreak years earlier, had some health problems, was tested for herpes by blood, and told she didn't have it because she came out negative. She had no idea how viruses work and transmitted to me and she didn't tell me this until after I had the atypical symptoms.

I've never had a classic outbreak. I had a chance to see a classic outbreak and thought, wow, no wonder docs are confused when I say I only have genital pain and redness. Thank God I persisted on having anything weird looked at despite being told dozens of times I didn't have herpes.

I have this gut feeling that I am not just a 1 in 1000 case of swabbing positive but never having a positive blood test. I've been watching some "cases" online of people with nearly the exact same symptoms as me. Most found out later, just as I did, that the person they were with was HSV1 or 2 positive. Most have been tested for everything under the sun.

So this is a plea for help for those with atypical symptoms. I don't think the blood tests are accurate in those cases. I chased this for a year with bad irritation, being told over and over again I was obsessing and definitely didn't have it. In the end I did, but if I hadn't been on crotch watch I never would have even noticed the tiny area I had swabbed positive.

I think herpes is much more prevalent than what people believe. Worrisome symptoms (even atypical) linked to a partner who was HSV positive would be enough to give me pause given the hell I went through.

I've never had so much as a blister.

-----------------------------
- HSV1 by culture @11 months
after initial outbreak
- 13 negative IgG tests up to
11.5 months
- 1 negative Western Blot
- Antivirals for the first
time
at 11.5 months


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bob12
Member since May-15-12
44 posts
Apr-24-13, 10:11 AM (CST)
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1. "RE: my letter to the experts"
In response to message #0
 
   Just something to think about on this. If the atypical cases with negative blood tests can be proven to be herpes (by either improved blood tests or other diagnosis), that opens up a whole new door for treatment and awareness.

I've never had a classic outbreak. Had I relied on blood testing I'd be still chasing other scenarios. Herpes has an unfair stigma, prove the atypical cases to be herpes as well and that opens up some whole new doors.

-----------------------------
- HSV1 by culture @11 months
after initial outbreak
- 13 negative IgG tests up to
11.5 months
- 1 negative Western Blot
- Antivirals for the first
time
at 11.5 months


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