Western Blot

[012088]

So I got diagnosed with HSV-2 back in October. It was an IGG with an index value of 2.11 and my doctor said for sure I was positive. At the time I knew nothing about herpes or testing and things of that nature. I do not present any symptoms, and have not had an outbreak. I have only slept with 3 people in my life, two of which I was in relationships with, and one was a one time fling. My other two relationships tested negative, and as I do not speak to the one-time fling guy, I had to assume it was he who gave it to me, which would mean I had it for about a year when I got tested. 
I soon learned about Terri Warren and how a lot of IGG tests for HSV-2 have high rates of false positives.

I called my doctor & told him that because my index value fell between the range of reasonable suspicion (1.1-3.5) I was looking for more info about confirmatory testing. He basically told me that he is never wrong about these things & that there was no doubt that I had herpes. He even tried to discourage me from purchasing the Western Blot test (the gold standard of herpes testing), and instead wanted to send me to his “infectious disease expert”. I found the Westover Heights Clinic website & reached out to Terri on her forum explaining my situation. 
Terri stated that in her professional opinion she believed that there was more than a 50-50 chance that my result was a false positive, especially because I do not have any symptoms & have never had an outbreak (although I know some people do not have outbreaks for years after initial infection). 

So I went through with purchasing the test anyways, and am now currently awaiting the results of that test. 
I wanted to put my story out there in case I am one of the few that actually had a false positive, and hope to inspire others in this range to take control of their health & not allow a doctors arrogance or ego stand in the way of getting the answers you feel you deserve! 
 

I am going to keep this post updated

[100918]

Good luck and let us know how it turns out!

I ordered the Western Blot kit back when I got my blood test diagnosis back at the end of 2018. My index value was higher, but I've never had an outbreak so I was thinking of getting tested with Western Blot. 

But then I met my SO, and since I had not done the test yet, I went with assumption that the positive was an actual positive and disclosed. He accepted me exactly as I am and does not have any worry about HSV at all. So, I never got the test done. We've been together now for almost 16 months and things are great and I have no intention of getting the Western Blot done because it won't change anything.

I am, however, hopeful for you that your positive was a false one...if it is, please make sure to have the discussion with any future potential partners and make sure you both get tested before having sex (even if you know you're negative, I think it's a good idea for you to both go in for a test if you both believe you're negative. Kinda like a "I'm making you prove it so I will happily prove it as well" type of thing). And if you have a partner who discloses to you that he does have it, you will be better prepared to keep yourself safe, and hopefully not reject that person just as you would not want to be rejected because of it.

[012088]

My current boyfriend has been with me through it all & does not care that I have it. He tested negative for it, but positive for HSV-1 & according to his index, has had it since he was a kid. He has been so loving & understanding through it all, really my rock. 
I know that whether I’m negative or positive, it won’t change anything, but I guess it’s more for my own peace of mind lol I can’t help thinking that I’ve tortured myself mentally over something that might not be true... 

I appreciate your kind words and advice, and I definitely agree with it 100% 

I hope to find out my results soon! The anxiety is KILLING ME! 

[012088]

Literally got my results from Terri about 15 minutes ago and they were negative!! 
My HSV-1 came back indeterminate (and my boyfriend has had it since he was a kid, so I’m not concerned too much with that) I might retest in 3 months just to know for sure, but I’m still considering it lol 

[HopefulHerpy]

I just got my results back. My results were negative for HSV1 & HSV2.

 I'm confused and traumatized because I know I have HSV1. I no longer have faith in any of the tests. 

https://ibb.co/7tsX7gF

[luna1088]

I have done test before which would always come back negative but this year I tested again and I have tested positive with a 1.33 and I have not had any symptoms either would you recommend me doing the western blot?

[100918]

From October until now is plenty of time for antibodies to be present. I would trust the negative result. No need to retest, IMO.

[012088]

You said you know you have HSV-1? Have you had an outbreak? Or a swab test done?

[012088]

10 hours ago, 100918 said:

From October until now is plenty of time for antibodies to be present. I would trust the negative result. No need to retest, IMO.

And yeah you’re right! My boyfriend’s index for HSV-1 is 21.10 so he’s had it a very long time (never had an outbreak either) and Terri said there’s little to no chance he can spread it to me (and we’ve been together long enough that if he was going to transmit it to me, it would have happened already) 
Terri basically said to save my money lol because if I retested, the HSV-1 will probably come back as indeterminate again & that it should be considered a negative 

I’m choosing to move on from my life & try to educate others on the testing 

 

[012088]

10 hours ago, luna1088 said:

I have done test before which would always come back negative but this year I tested again and I have tested positive with a 1.33 and I have not had any symptoms either would you recommend me doing the western blot?

Strange that it would now suddenly change, but since that index is so low, I would absolutely look into the test.

The CDC doesn’t even recommend testing for people who are asymptomatic for the simple reason that the tests are inaccurate and unpredictable 

but you can always ask Terri herself o  her Westover Heights forum 

[luna1088]

On 5/27/2020 at 2:45 AM, 012088 said:

Strange that it would now suddenly change, but since that index is so low, I would absolutely look into the test.

The CDC doesn’t even recommend testing for people who are asymptomatic for the simple reason that the tests are inaccurate and unpredictable 

but you can always ask Terri herself o  her Westover Heights forum 

Is it like this forum as well? Well I’ve had multiple test through the years since 2015 when I thought I was having symptoms but they would always come back negative I have them done 2015-2016 but skipped 2017-2020 and in 2017 I was with a new partner that gave me multiple STDs so that’s why I decided to do it this year because I started seeing someone new and was afraid to do anything and I tested and came back HSV 2 positive 1.33 and before I would get .78 and .66 so I was negative and well HSV 1 I’ve had it for years so it come up 34.1 or 55.2 

[012088]

On 5/28/2020 at 7:52 PM, luna1088 said:

Is it like this forum as well? Well I’ve had multiple test through the years since 2015 when I thought I was having symptoms but they would always come back negative I have them done 2015-2016 but skipped 2017-2020 and in 2017 I was with a new partner that gave me multiple STDs so that’s why I decided to do it this year because I started seeing someone new and was afraid to do anything and I tested and came back HSV 2 positive 1.33 and before I would get .78 and .66 so I was negative and well HSV 1 I’ve had it for years so it come up 34.1 or 55.2 

No, her forum is not like this. 
You have to pay $20 to ask her two questions. 
She answers your question, and based on the info you provide her she tells you whether you should get the western blot or not. Based on what I’ve read & what I’ve seen on her forum, she’ll most likely tell you to get it. You can also schedule an eVisit with her to discuss it face to face. After the eVisit is over, based on the convo & whatever choice you make, she will charge you for both the eVisit and the test itself. Then you have to call the Univeristy of Washington and have it mailed to your home. Terri will email you with directions on how to complete the process. I must warn you, the test is expensive, and based on where you live there might not be places to draw and spin your blood. Shipping it to Seattle is also quite expensive. But it is the most reliable test out there, so I didn’t mind spending the money.