This forum is an un-mediated, patient-to-patient forum for questions and support regarding herpes issues such as: Herpes symptoms and treatments, causes, diagnosis, and herpes in men, tests, telling your spouse or partner.
Seeing everyone else’s story really helped me so I’m hoping this will help others as well.
I went in for a routine physical, nothing wrong. I asked to be tested for everything possible. The test results came back absolutely great on everything, HSV 1 negative, but I tested positive for HSV 2. My world went into a tailspin. He recommended Valtrex on a daily basis, forever. I asked how accurate the test was, he said “it’s pretty accurate, but we can run another if you want.” So we would wait on those results, then have a sit down about my options.
I had been with one girl in the last six months, four total since my last physical. All of these girls I’m still friends with, they get regular check-ups. I called the last girl I’d been with and she freaked, but she said she had gotten tested a month ago and everything came back good. She’s had cervical cancer in the past, and her doctors keep a very close eye on her immune system so they have to check for everything every 3 months. She told me to keep her updated. I didn’t feel like I had it, I honestly didn’t believe any of girls I’d been with had it, and the doctor told me that my last physical two years ago I came up clean.
I researched for over 9 hours that night. The virus, the studies, the tests, how many people never know they have it, etc. Probably everything you are researching right now. Then I read on this site where Dr. Handsfield believes that the chances of a HSV-2 false positive are greater if you are HSV-1 positive, which I wasn’t. I am HSV-1 negative. I also found the Herpes Blood Test Reference guide http://www.ashastd.org/uploads/pdfs/HerpesBloodTestGuide.pdf
Long story short, I called my doctor for the index level on my first test, it was 1.35, a low positive, which most experts recommend confirmation. So I called the University of Washington so I could actually talk to a live person. First off, they are very willing to talk to you about it, 206-520-4340, they have been leading in research on herpes for a long time. They invented the Western Blot test, they have the patent on it. She also explained most of the other tests look at two antibodies in the blood which respond to HSV virus, if these levels are high enough (above 1.1) the FDA has regulated from research studies that you are HSV positive. Western Blot is so much more accurate is because they look at 14 different antibodies in the blood to get a much broader and much more accurate picture of a possible response to HSV. Its $160. She recommended I get the second test my doctor ordered, expect the same result, then get Western Blot. If, for any reason the second test from my doctor came back negative, she didn’t see any reason to get the Western Blot considering my first low positive was so close to 1.1.
When I went to get my second test, the doctor talked to me. He had never heard of the Western Blot, all he knew was that LabCorp offered a HSV-1 and HSV-2 test, he was very open to hearing what I had learned, and his whole demeanor completely changed after I told him I had spent half an hour on the phone with the Washington University Virology department. He was very willing to do whatever he could to get a test to them and find out for sure. He also told me one more very interesting thing, he said that all this research, all the testing for the commercial blood tests such as HerpesSelect, and everything the FDA has approved for these HSV blood tests levels indicating negative and positive values were funded BY THE DRUG COMPANIES THAT MAKE THE HSV MEDICATION. I’m not a conspiracy theorist, but I know good business when I see it. That’s all I’m going to say on that subject, but all the sudden the opinions of Washington University and their results, and the opinions of people like Terry Warren increased in value by leaps and bounds to me.
Another thought had occurred to me during my research, Washington University told me that for low positive values ranging 1.1-3.5 has about a 50% chance of being a false positive and that they could tell by looking at more than just the two antibodies that most of the other tests looked at. Also, the closer to 1.1 I was, the more chance I had of it being a false positive. So I began thinking, does anyone know what causes these low index levels of antibodies? I couldn’t find anything other than possibly being HSV-1 positive could have an effect, otherwise, it is unknown what else could cause these low index levels of antibodies that triggers a false HSV-2 positive.
In the last two years, since my last physical, I had dropped almost 40 lbs. I workout 5-6 days a week, I cycle workouts using muscle confusion, I cycle diets to get results I want while staying healthy. The approach of system confusion to keep your body guessing both in eating and exercise. I take a lot of natural supplements every day, fish oil, vitamin D3, glucosamine, fiber, a daily multi-vitamin designed for athletes. 32 oz of green tea every day, plus I also cycle pre-workout nitric oxide formulas. I’ll do 24 hr water or juice fast two or three times a month to help clean my system. When I discovered that no one really knows what causes the antibodies level to rise to the point of low false positives I did the following.
I was 5 weeks into a 12 week workout cycle. I stopped everything. I had no clue what else in my system might cause those antibodies to rise so I just put my entire regime on pause so my body would be as normal as possible when I took the second test. It was six days between the first and second test. I also have done research in the past on how the mental approach is just as critical as physical. I focused on positive things, thinking positive thoughts that I did not have HSV-2 (I simply refused to believe it) focused on returning my body to normal, with a normal diet, no workouts to let my body recover from the intense 5 weeks, and lastly my doctor wanted me to fast from midnight the night before my physical, I had just fasted the entire day before my physical and that first test. For the second test I ate normal. I also kept in contact with this girl several times a day. She is the only one who knew about it, and she was totally there for me and helped me think and talk things through, I was doing everything I could to get as healthy (physically and emotionally), relaxed, and normal as possible before that second test. Emotional support is key. I was scared, but I never let myself dwell on that.
My doctor called me with my second test results, he was very shocked that it came back COMPLETELY NEGATIVE! He said he didn’t know what happened, but that my HSV-2 index level had dropped from 1.35 to below 0.91 in those six days between tests. He complimented me on not giving up, and agreed with Washington University that he didn’t see any reason to still get a Western Blot test, He was confident that I did not have HSV-2. Please keep in mind that I DEFINITELY DO NOT HAVE HSV-1 either and was still a false positive for HSV-2.
I don’t know what caused the first low positive. I greatly appreciate our medical community. They do their best, but they do not know everything. I don’t know what caused that fast drop in index levels, a glitch, or if I somehow was in the 2%-5% false positive area, or if it was my work, emotional and physical, to return my body to the most healthy state before that second test. As I understand it, the research hasn’t been done that could explain it. I was never in denial, while I was doing the research on false positives, I was also doing simultaneous research on how to live with herpes as well, BUT my deepest gut feeling was that I didn’t have it, and I refused to accept the diagnoses until Washington University smacked me in the face with it.
THERE ARE OTHER THINGS IN OUR BODIES THAT CAUSES THOSE ANTIBODIES TO RISE, not just HSV. Which is why Washington University looks at more than just those two to get a much more broad and accurate picture.
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