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Cure Coming Soon

HSV Facts needed for letter (Need your input)

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Cure Coming Soon

Well I received an email from Dr. Debbie Stein at PCAST. I would like to send her some great information. It needs to be short as I'm going to request she reviews my email with other PCAST members and President Obama on Oct. 22-23. Dr. Cullen's grant request was not approved so I'm hoping we can get the attention of PCAST regarding his research along with Harvard and UofF.

I'd prefer to send the email Monday the 19th. Give me some HSV facts that might interest PCAST to become interested in vaccine and cure research. I've attached her email below. I will not be attending in person. The last time I spoke with Dr. Stein she stated she'd review information I sent her about HSV with PCAST. I'd like to provide her with a shorter email but with a wealth of information about HSV and those conducting research, etc.

Greetings,

Thank you for signing up for the public comment portion of PCAST’s meeting. At this point, the number of individuals who have signed up for participation exceeds the time we have available. Therefore, I am asking each of you to:

(1)Confirm your participation by responding to this email;

(2)Consider not participating if you have spoken at a previous PCAST meeting on the same topic so that others have an opportunity to provide their thoughts to PCAST about their ideas.

If you do decide to speak at the PCAST meeting, your time limit will be two minutes. This time will be strictly followed. As indicated in the Federal Register notice for this meeting, the public comment period is designed for substantive commentary on PCAST’s work topics and not for marketing purposes. Note that PCAST does not provide travel costs for your participation in the public comment session.

Thank you again for your interest in communicating your ideas to PCAST. Please feel free to contact me with any additional comments or questions.

Deborah D. Stine, PhD

Here's what I got so far.

Dr. Stine,

I am not able to participate in person. I do however respectfully request that you speak with those in attendance at the next PCAST meeting on Oct. 22-23, 2009. As stated in my previous email, I would like to inform President Obama and all those of PCAST about the current Herpes Simplex Virus research, HSV-1 (Cold Sores & Genital HSV-1) & HSV-2 (Genital Herpes which can become Oral Herpes). It's a serious virus, 75% of the U.S. Population has HSV-1 and 1 in 5 persons have HSV-2. This virus is sometimes a deadly virus to babies and I believe more funding is necessary to protect our youth, cure those infected and protect future generations. Researcher Dr. Knipe at Harvard University is researching a HSV vaccine. Researcher Dr. Cullen at Duke University is researching a cure for HSV. Researcher Dr. Bloom at University of Florida is researching a way to inhibit HSV which would prevent recurrence.

Facts about HSV:

  • HSV-1 (Cold Sores & Genital HSV-1): Herpes labialis is an infection caused by the herpes simplex virus 1. It leads to the development of small and usually painful blisters on the skin of the lips, mouth, gums, or lip area.
  • Most people in the United States are infected with the type 1 virus by the age of 20. 75% of the U.S. population has HSV-1.
  • The virus remains in the nerve tissue of the face.
  • The facial cold sore virus can infect the genital area causing genital hsv-1.
  • Herpes infection of the eye is a leading cause of blindness in the United States, causing scarring of the cornea. An estimated 400,000 Americans have recurrent ocular herpes, with 50,000 new cases occurring each year.
  • HSV-2 (Gential Herpes & Oral Herpes): In America, one out of every five of the adolescent and adult population are infected with gential herpes.
  • It is possible for a person to carry the virus without knowing that they have it, since up to 80% of people who are infected with gential herpes show no signs of the infection.

Sincerely,

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    • Jayne
      I know this thread is a couple of years old, but it’s been helpful to me, and I wanted to contribute as well. Back to Berliner’s original post, I’ve tested negative on several IGGs, with the latest ones being 1 yr and now almost 2 years past exposure.  Figuring out what was going on was the worst nightmare I’ve ever been through in my life. I made the mistake of drinking heavily a week after my father died of cancer, and I had unprotected AS with an ex, who happened to be poly and had some occasional unprotected M2M encounters.   Three days later I had a red line rash along my (sorry to get explicit) crack. This was followed by a rectal burning. Tested negative for G&C and related tests.  Over the next couple of weeks I had severe swelling and discomfort in my lower right quadrant and was told to go to the ER, where (I guess as a standard practice) they did a cat scan, which revealed nothing.  Also not a bacterial infection.  However the repeated manual examinations that occurred at urgent care and the ER seemed to relieve the abdominal pressure over the next few days.  I then had diarrhea for the next several weeks after.  I developed what felt like internal hemorrhoids, which were exacerbated by the diarrhea, and a gastro doctor confirmed via digital exam that there was indeed some sort of mass that felt like possible hemorrhoids. He ordered a sigmoidoscopy, but by the time it was undertaken, whatever was there was gone. After the procedure though, I felt much better for a while, possibly due to digestive issues clearing up after the colon “cleanse.” But this was concurrent with other issues.   About 3 weeks after the encounter I developed a large rash on my left thigh. Shortly thereafter I started having light sensitivity issues, culminating in a fever-like state after being outside in the sun only for 15 minutes after work. At work around that time for a couple days I felt like I was going through life encased in a gauzy gel- similar to being on laughing gas at the dentist, but not in a good way. I didn’t know what the hell was happening to me. I developed a severe case of canker sores for about a day. Later during a sunny drive, after getting back in the car at a gas station I noticed a red blotch below my lip. I tried to shrug it off but it happened again on the trip back.  So by about a month after the encounter I was having more anxiety. I spent the night at a friend’s house and woke up with a massive, swollen red eye and swollen lips. I got eye drops for bacterial conjunctivitis but that was wishful thinking.  A couple of weeks later, my lips were covered in sores. I smothered them with abreva. By the next day, they had mostly gone away. I tried to do a swab test at urgent care (I believe it was the next day), but there was not enough there to make any sort of positive diagnosis. Since then, I’ve had what you could call repeated aborted lesions and red blotches that appear around my mouth, particularly after stress and alcohol consumption. But even having peanut butter or chocolate would set it off for a long time. Fair skin doesn’t help- there was no hiding it. Two months after the encounter, I had my first vaginal burning- it was pretty intense and I had to use ice cubes because I didn’t know what else to do.   The worse feeling though was the periodic flare-ups of rectal itching/burning, often accompanied by another red line rash. It made sitting uncomfortable for about the next two months. I couldn’t wear pants at work- only skirts seemed to make things somewhat less irritated. And for the first three months, I was still testing for HIV along with HSV because of the overlapping symptoms (rash, diarrhea, neural pain, severe flu like symptoms without fever). I lost a lot of weight and had panic attacks. On top of all this I had just moved to a new city and started a new job and didn’t have a support network. And the sad thing is, I had to deal with all of this instead of being able to grieve for my father and being a better source of support to my mother. She had to support me without understanding what was happening.   Another bad thing through all of this was having both my ex and my current partner treat me like I’m crazy. That makes me feel alone and in the dark. Another “hysterical woman.” F*** that.  And while I felt grateful that my current was at the time still ready to be with me even if I had hsv, it’s a little discomfiting that he still doesn’t really believe me. But I’ve learned to live with ambiguity. And now I’m used to doctors as well as partners acting like this is nonexistent. Especially with negative IGG tests even 2 years later, which have left me without any answers.  I’m lucky in a way to be able to blend in because I don’t get obvious sores, genitally or orally (I can cover up the blotches with concealer, and they fortunately have lessened in frequency). But I still get the rectal itching/burning every six months or so (anthistamines seem to alleviate it a bit). And as more of a concern, I’ve had a cramp in my lower right quadrant ever since, which feels like it’s in my digestive tract. Since this has pretty much spread everywhere else in my body, intestinal involvement wouldn’t surprise me, and it isn’t unheard of anyways. I’ve tried to move past this and have since gotten married to my partner, who is a source of support (even if he doesn’t believe I’m having health problems. I know that’s a contradiction but occasionally I want to believe that too.).  I’m also newly pregnant, and symptoms have started to flare up again somewhat. I’m sure this will be an adventure. Hopefully more good than crazy. I know I’m going to struggle with the fear of passing this along but I’m trying to reconcile what doctors say (which is that it is extremely rare) with my own intuition about what I need to be careful of. Maybe I’ll repost with an update down the road. In short, there are people out there who test negative and have to live with loved ones and doctors thinking that a negative test closes the book on this. Again, learning to live with ambiguity is a real life lesson that I’m still coming to grips with. This forum and specifically this post have been a source of comfort that I haven’t been able to find elsewhere. Thanks everyone for the support for the community.     
    • Rockster
      You deepthroat so good that you get all kinds of mouth-to-skin-of-base contact? Kudos to you, but that is extremely rare. 
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