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Cure Coming Soon

Help me with a letter that I'm sending to PCAST

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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 by late Sunday night or early 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

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Cure Coming Soon

Here's the final letter

Dr. Deborah 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).

According to a study conducted by The American Social Health Association and the Kaiser Family Foundation, there will be more than 15 million new cases of sexually transmitted disease every year. That boils down to 41,095 newly infected every single day. One of the most common sexually transmitted disease is herpes simplex virus (HSV) the cause of cold sores and genital herpes. 75% of the U.S. Population has HSV-1 while HSV-2 is affecting approximately 45 million Americans. It is estimated that 1 in 4 adults over the age of 12 have HSV-2. They're currently no cures or vaccines for HSV-1 and 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. David M. Knipe at Harvard University is researching a HSV vaccine. Researcher Dr. Bryan R. Cullen at Duke University is researching a HSV cure. Researcher Dr. David C. 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 virus can be transmitted through fluids from the mouth (asymptomatic viral shedding) even when the carrier is not having an outbreak. This is the #1 cause of HSV transmission.
  • The virus can infect the genital area causing genital hsv-1 through oral sex.
  • 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 (Genital Herpes & Oral Herpes): Genital herpes is a sexually transmitted viral infection affecting the skin of the genitals.
  • In America, one out of every four of the adolescent and adult population are infected with genital herpes.
  • It is possible for a person to carry the virus without knowing that they have it, since up to 90% of people who are infected with gential herpes show no signs of the infection.
  • Once a person is infected, the virus hides within nerve cells, making it difficult for the immune system to find and destroy it. Within the nerve cells, the virus can remain dormant for a long period of time, which is called "latency."

I hope with the information I've provided to PCAST, those affected by the HSV virus may be one step closer to having cure and vaccine research be funded. Besides the doctors I've listed, they're many other universities and private companies studying both cures and vaccines.

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smithconfused

Fact Highlights for letter

This information is from different sources: CDC and NIH. I think these items are what you should highlight or focus on.

1. http://cdc.gov/std/Herpes/STDFact-Herpes.htm:

Genital herpes can cause recurrent painful genital sores in many adults, and herpes infection can be severe in people with suppressed immune systems. Regardless of severity of symptoms, genital herpes frequently causes psychological distress in people who know they are infected.

In addition, genital HSV can lead to potentially fatal infections in babies. It is important that women avoid contracting herpes during pregnancy because a newly acquired infection during late pregnancy poses a greater risk of transmission to the baby. If a woman has active genital herpes at delivery, a cesarean delivery is usually performed. Fortunately, infection of a baby from a woman with herpes infection is rare.

Herpes may play a role in the spread of HIV, the virus that causes AIDS. Herpes can make people more susceptible to HIV infection, and it can make HIV-infected individuals more infectious.

2. http://www3.niaid.nih.gov/news/newsreleases/2009/herpesHIV.htm:

New research helps explain why infection with herpes simplex virus-2 (HSV-2), which causes genital herpes, increases the risk for HIV infection even after successful treatment heals the genital skin sores and breaks that often result from HSV-2.

3. http://health.nytimes.com/health/guides/disease/genital-herpes/complications.html:

Complications of herpes.

I know this may seem long but you can definitely make it concise. Mention the risk between genital herpes and HIV as discussed in the NIH study. That should definitely get their attention. Make note that herpes is not part of a routine STD screening. Although CDC says that there has been a decline in herpes infection, people are still getting infected each year because lack of education of the virus, misinformation, misdiagnosis by health care providers, etc. You can also discuss promising research for finding a cure by Dr. Cullen. Stress the importance of vaccination and preventative measures. Although, I don't know the exact cost of herpes on our health care system, I am pretty sure it affects it somehow.

Last but not least, the stigma attached to herpes. Yes, it is an STD, but we herpes does not discriminate! It does not matter what class, ethnicity, race, gender, education status....ANYONE CAN GET HERPES TYPE ONE OR TWO! Heck, if 1 out of 4 people has it, then a few people at that meeting have and don't even know it.

IF you need anything else, please let me know.

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HerpSgBoy

As mention above, do you know if there is any representative last year at PCAST for HSV? If there is i think the chances of getting funding and everything is really very very slim. And its very sad. =(

Hope we still can get it through PCAST.

First hope from Dr. Cullen is gone =( Really very depressed and sad now =(

Feeling hopeless.

But will help if there is any help needed. Really hope PCAST can help out. Our last hope.

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Cure Coming Soon
As mention above, do you know if there is any representative last year at PCAST for HSV? If there is i think the chances of getting funding and everything is really very very slim. And its very sad. =(

Hope we still can get it through PCAST.

First hope from Dr. Cullen is gone =( Really very depressed and sad now =(

Feeling hopeless.

But will help if there is any help needed. Really hope PCAST can help out. Our last hope.

I feel your pain. When I'm not feeling happy about this horrible virus, I'm sure 95% others on this forum are feeling the same way. I'm trying my hardest to have my letter read aloud at the next PCAST meeting.

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smithconfused

To Cure, i think your letter is good but I think you should include the research study done by NIH on the risk of GHSV and HIV. Just a suggestion. Many people do not think HSV is a life threatening so it seems to not be that serious or a big deal. It is a big deal for those of us suffering from it.

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Cure Coming Soon
To Cure, i think your letter is good but I think you should include the research study done by NIH on the risk of GHSV and HIV. Just a suggestion. Many people do not think HSV is a life threatening so it seems to not be that serious or a big deal. It is a big deal for those of us suffering from it.

Thanks for your input. I've already sent the letter and it's been received.

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HerpSgBoy

its 22nd of October now. Hope The PCAST works, lets pray hard guys.

Ohh ya cure, is anyone attending on our behalf?

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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.     
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