Western Blot is WORTH IT - understanding your body = peace of mind

[stars468]

Hi all,

 

So I too am so incredibly grateful for this forum, and for all of the information available on here, because it is AMAZING how little the doctors you trust to take care of you do not actually know about this virus! My story: My ex had been positive for HSV2 while we were dating, luckily finding out before we had sexual contact, so that I was able to make an informed decision and we could make responsible choices together to keep the virus from spreading to me. This was the man I lost my virginity too, so there was a lot of emotion tied to this decision as well. I had some bumps and skin irritation appear after we had been sexually active, but had always gotten them checked out and biopsy/culture by the doc and everything was just dermatitis, not HSV2. After we broke up, I had gotten the IgG blood test when i did an all around STD test screening and was devastated to have my results come back as positive for both HSV1&2. I was already depressed and hurting from this man breaking my heart, to learn that I not only got dumped but then also had HSV2 but not him just made everything so much harder to process.

 

Finding this forum helped a lot, and here I learned about the whole "false positive" 1.1-3.5 range and I realized....my doctor never even discussed my actual number result with me, just that it was positive. So i went back and asked to see the actual numbers and results, and learned that my HSV 1 was only 1.02, and HSV2 was 1.53....both considered extremely low positives. Especially when considering that my last sexual contact with my ex was about 8 months prior to my getting the blood work done. I tried to discuss this with my doctor, and explain my frustration about her not taking the time to fully discuss what the numbers mean, and I was told "Oh well it never becomes more negative, it means you definitely have it and it will keep growing over your lifespan" I was confused and wanted to know how to understand when I was having an OB and when my skin was just irritated, because I always had had sensitive skin so after getting the diagnosis, every twinge down there had me extremely anxious and worried. The doctor and nurse told me to "avoid food triggers, and that every irritation is most likely an OB" which is crazy, because that can't be normal to have that much OB! needless to say I was having a ton of anxiety and stress and just wanted to understand what was going on with my body so I could process it and then learn to accept and move on.

 

so my hero here is @WCSDancer2010 - THANK YOU for providing me and many others here with the information about the Western Blot, and The Westover Clinic and Dr Taulbee. I asked my current doctor about a WB and she had no idea what I was talking about. It was worth every penny to become a phone patient of Dr Taulbee, she and all the staff were so kind and understanding, and really took the time to answer all my questions and make sure they could help me understand more about what my body was telling me. One thing she said really stuck with me and was a problem I know I fixated on, "Not every skin irritation or bump is herpes, there are plenty of other explanations and that is why proper testing is crucial to make sure you know what is going on with your body"

 

SO I had my WB test, and before I got my results back I had already made peace with that fact that if I did in fact have HSV2, that doesn't change who I am, I just now know I have the skin condition and can not treat it to the best of my ability and take of myself, and do the same to my future partners. I just wanted the clarity to know what is going on!

I got my results back today - and I am negative for both HSV1 and negative for HSV2! YAY Negative!! So 2-3 months of stress and anxiety were all for no reason other than my doctor not being competent enough to understand this common STD. Everyone who has low IgG numbers should pursue the WB - nothing beats having that clarity of knowing what is going on with your body. I am so relieved to be negative, and I know that if I dated another man who had HSV2, if I cared about him enough to think he could be "the one" like i did before, then yea I would take that risk again. If I am honest with myself, I would have been less upset about the diagnosis if my ex and I were still together, so maybe I would wait longer before having sex to be sure that the man also is thinking long-term potentially marriage material, but if I ever have a scare like this again I know exactly where to go wand what dr to talk too. I am passing this information on to all my friends so that noone I know goes through that stress and anxiety that came from not understanding if my body had a virus or not. Even if it is positive - its better to know with certainty so you can take anti-virals and take care of yourself targeting the problem, rather than wonder if every little bump or irritation is something to stress about This forum is amazing and thank you for all the support and guidance I had received during this time!!

[WCSDancer2010]

That's awesome news! Glad to have been able to help you..

 

Perhaps you can pass the info on to your Dr including the Westover Heights info (maybe ask her to call them to get up to date on her info) and the WB testing..... then she will know the right info for anyone who she advises in the future ;)

 

Happy Holidays!

[stars468]

Yes I already did! I told them they need to provide better information and if they can't offer the WB there, they need to point people with those confusing low positive scores toward a place that can better answer our questions and get a more definitive test for HSV. I have been keeping all my information i've gathered since my mis-diagnosis to give to my doctor as well as keep on hand in case any friends or something ever find themselves in my situation!

 

Thank you so much for everything WCSDancer2010, while I am very glad I am negative, even if I had been positive I had begun to be at peace and accept it and just focus on moving forward and being happy based on the blogs/articles you and aerial write, I'm so glad this forum is here to help people who feel lost/upset/alone about this stuff. its people who make the stigma that makes us all so stressed about HSV and its got to change!

[WCSDancer2010]

Curious to know - what did your Dr say when you gave them the info?

[stars468]

they said they were glad that I was negative, and that they would review the information...at least that is what her nurse-staff said. my dr emailed me later asking me to bring the info/test results with me to my next appointment so she could talk to me about it in person about it. But seemed very receptive so far

[WCSDancer2010]

That's great - perhaps you can bring her some copies of our handouts too ... ask her to copy them and hand them out with diagnosis ... we know the Dr's don't have time to counsel people so this can help them to let people know there's a support system for them :)

 

Handouts + disclosure e-book:

http://eepurl.com/b4IPP

[stars468]

Awesome! thanks for the info, I will be sure to include that in what I pass on! Honestly being informed was/is the best way to like feel OK about all of this stuff, the more information I had and understanding, the more empowered I felt about it.