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PostPosted: Wed Sep 08, 2010 8:28 pm 

Joined: Sat Feb 07, 2009 10:41 pm
Posts: 12
About 8 years ago I was diagnosed with genital type 1 through a swab/culture test. My initial OB was very painful and seemed to last forever. I started taking meds within a few months (I think I started with 1g Valtrex daily) and it worked wonders. Over the next few years, any symptoms I had were extremely mild and anything that seemed like an actual OB happened maybe once per year and was mild, lasting only a few days with minimal discomfort. Over the years I've had a few different kinds of symptoms/things I think were herpes but not 100% sure, such as something much more pimple looking (whereas previously I would get just a pink bump that looked like a bug bite). Then, early last year I went through a process of feeling like I was being infected for the first time all over again -- prodrome feelings like bugs crawling all over my thighs, butt, even my face; sore thigh muscles; sore groin lymph nodes. This all lasted for weeks, and then I started developing little pimple-like things on my butt, and general irritation on both butt cheeks. I was thinking I had become infected with Type 2. Otherwise, it seemed so weird that my Type 1 would be acting up so much and in such new ways. I should also say that I was still on suppressive therapy and have been, constantly, since my initial Type 1 diagnosis 8 years ago. (Also, last year I posted about these symptoms and received, from Betsy, I think, feedback that what I was describing did not sound like Herpes.) So last year, after a few months, and then again in the Fall, I was blood tested for Type 2. Negative both times. And last year sometime I switched to Famvir suppressive to see if that would work better than the Valtrex since all those strange/new symptoms persisted on and off. Skip ahead about a year... After another round of symptoms a few weeks ago, last week I got tested again, this time for both Type 1 & 2 (IgG HerpesSelect AB). My results:
Type 1: 0.6
Type 2: 0.13
(negative is 0-0.9)

So, according to these test results, I don't have Type 1 (or Type 2), even though I received a genital Type 1 diagnosis through a culture/swab test 8 years ago.

Is it possible the Type 1 test is negative because I am on daily suppressive medication? I read about that on someone else's post. I'm currently taking Famciclovir 500mg once per day.

Is it possible my body is having a less than ideal immune response to the Type 1 and, therefore, my antibody level is low?

Within the next month or two I might stop taking the Famciclovir, wait a few weeks, and then repeat the tests, which might help answer my first question about if my daily medication has an impact on my antibody levels and the test result. I'll also know if, going off the daily meds, my symptoms seem to increase.

I'll also mention that I have very sensitive skin, have other itchy skin issues (that are clearly not herpes related), and will soon be tested extensively for allergies to all kinds of things (not just food, but chemicals, additives, etc.). This has all been very confusing for me.

Thanks so much for your feedback.


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PostPosted: Wed Sep 08, 2010 11:08 pm 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
even the best blood tests miss 1 out of every 10 hsv1 infections. YOu know you have it and you know where you have it. a negative blood test for hsv1 is meaningless and says nothing about your immune system either.

I'd stop the famvir and follow up on every symptom you have from that point forward. I know it's a pain but it'll help you figure out what is going on.

betsy

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PostPosted: Thu Sep 09, 2010 6:06 am 

Joined: Sat Feb 07, 2009 10:41 pm
Posts: 12
when you say "a negative blood test for hsv1 is meaningless", you're talking about my particular situation (given that i had a positive culture years ago), right? otherwise, that seems like a rather confusing statement given all the testing that is discussed on this board.

thanks.


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PostPosted: Thu Sep 09, 2010 7:26 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
correct - in your situation a negative hsv1 result is meaningless.

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PostPosted: Fri Sep 10, 2010 7:29 pm 

Joined: Sat Feb 07, 2009 10:41 pm
Posts: 12
could you address my question about getting tested while on daily suppressive therapy, and if this impacts the result? if you have any info on this, or can point me to any source materials, that would be great. thanks.


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PostPosted: Sat Sep 11, 2010 11:57 am 

Joined: Mon Feb 05, 2007 11:47 am
Posts: 5443
Location: PA
it's been long enough that being on suppressive therapy isn't a real issue as far as affecting your blood test - it's been years, not weeks/months. we know it can reduce igg by 10% if I recall but it still keeps a + result a + result. As I said, the blood tests aren't so good in general at detecting hsv1.

if you suspect you might've contracted hsv2, a lesion culture would pick up on it which is why I suggested stopping suppressive therapy totally and getting seen each time you have symptoms to get to the bottom of things.

betsy

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PostPosted: Wed Sep 22, 2010 12:42 am 

Joined: Fri Jun 05, 2009 7:37 pm
Posts: 144
Hi lam 24,

Just thought I'd chime in here. Many of the things you described sounded like what I had while on acyclovir. The bugs crawling up the butt and thighs and face. I also had (still have some, but less often) tingling on my fingers, toes, arms, legs, ankles, scalp. I think many of those were side effects for the meds. I didn't have that reaction right away, but over time the meds seemed to build up I suppose. I'd love to hear if things get better when you get off the meds. Betsy knows better than me of course, but just wanted to post about my experience.


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PostPosted: Tue Sep 28, 2010 7:16 am 

Joined: Sat Feb 07, 2009 10:41 pm
Posts: 12
informed - thanks for chiming in. i've just stopped taking the meds (i've been on Famciclovir for a little less than 2 years; was on Valtrex when all the new symptoms/bug crawl feelings started). will see what happens over the next few weeks, and will get tested again. thanks.


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PostPosted: Tue Sep 28, 2010 11:28 am 

Joined: Fri Jun 05, 2009 7:37 pm
Posts: 144
please do keep me updated. i've been off a little over a month. things are still happening, but less frequently and less intense. let me know what happens with you are off. i'm curious! good luck!


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