Jump to content

This thread is designed to inform everyone how you contributed to supporting a cure!


Movingslowly

Recommended Posts

I think this thread will be beneficial to everyone. Just post a quick comment under this thread stating how you contributed to supporting the H cure/better treatment. Including: letters/emails sent to whomever, signing the petition(s), educating another person about the researches on finding a cure/better treatment, donating, and whatever else you believe supports the cure. By briefly stating what you have done to support herpes research helps everyone see how much effort is being put forth.

What I have done today!

1) Sent letters to my senators, congressman, US president, and my state governor.

:call:

Link to comment
Share on other sites

Began the initial contact with Prof. Bloom, told him about Pepsi Refresh Project and with thousands of peoples votes, we got him 50K for research. Also creating an HCC video (link below) talking about Prof. Bloom's research.

Link to comment
Share on other sites

1. Inititated and signed petitions.

2. Donated to Bloom and Cullen and still do.

3. Wrote NIH, NIAID, Peregrine and others.

4. Listed petitions on blogs (by the way have over 600 emails sent from last 2 petitions to date 12/13/2010). Encourage each of you to list the petitons anywhere you think will drive signatures.

LET'S GET SOME MORE ATTENTION ON THIS DISEASE!

Link to comment
Share on other sites

Hi...I,ve signed all the petitions I,ve seen on this site but was thinking it may be useful to tell us that don't know how to post these links on other sites and how to find addresses to people important to our cause. Just a thought.....have a nice day!

Link to comment
Share on other sites

Just added all four herpes petitions to another forum I believe that no one has targeted yet! I see that people post blogs on there hourly and one of the threads is about having a STD. I hope this increases the amount of signatures. Keep up the work because together we can make a change!

Link to comment
Share on other sites

Just added all four herpes petitions to another forum I believe that no one has targeted yet! I see that people post blogs on there hourly and one of the threads is about having a STD. I hope this increases the amount of signatures. Keep up the work because together we can make a change!

MS, great work! I hope everyone will become as involved as you. The petitions and donations are our greatest tool to fight for a cure and better treatments. Silence, inaction and fear to send a buck over to one of the researchers certainly will get us nowhere!

Thanks again for your efforts.

Link to comment
Share on other sites

Always! I learned young that if you want something done then standing in the back of the line won't help you! Need to step up and let your voice be heard. Everyone wants this nightmare to end, well put in effort to supporting the scientist who are fighting for our cure.

Link to comment
Share on other sites

  • 4 weeks later...
  • 2 weeks later...

Last night I posted all the petitions on about 15 or 20 different yahoo groups. There are thousands of groups, but I tried staying with the ones related to h or anything about sexually transmitted diseases. I also targeted any group that suppported any kind of ocular blindess. Hopefully, this will increase the number of signatures on the each petition.

Link to comment
Share on other sites

Last night I posted all the petitions on about 15 or 20 different yahoo groups. There are thousands of groups, but I tried staying with the ones related to h or anything about sexually transmitted diseases. I also targeted any group that suppported any kind of ocular blindess. Hopefully, this will increase the number of signatures on the each petition.

MS, thanks for your help. We need more people willing to step up to the plate like you do!

Thanks again.

Link to comment
Share on other sites

How I contributed

I.like most people, were confused after I was diagnosed with HSV. But, as I acclimated, I began to realize I can make a difference as well. I have:

1. Signed petitions

2. Voted for Dr. Bloom in Pepsi Challenge with every e-mail address I could find for BoA

3. Befriended people and assisted them with questions

4. Donated to Dr. Knipe and Dr. Bloom

5. Wrote my congresspeople

6. Post ANY hopeful information about progress towards curing viruses

7. Was proactive about telling my partners and my children about my situation

I, now, refuse to be ashamed. I am fighting back.

Link to comment
Share on other sites

  • 2 weeks later...

Donated $30 to Dr. Bloom at UF. Now, I'm searching for more websites to post these petitions. Then I'm submitting several letters to the websites provided in this forum.

Link to comment
Share on other sites

Donated $30 to Dr. Bloom at UF. Now, I'm searching for more websites to post these petitions. Then I'm submitting several letters to the websites provided in this forum.

MS, good job... thanks for your hard work and hopefully it will inspire others to do the same.

Link to comment
Share on other sites

  • 11 months later...
I think this thread will be beneficial to everyone. Just post a quick comment under this thread stating how you contributed to supporting the H cure/better treatment. Including: letters/emails sent to whomever, signing the petition(s), educating another person about the researches on finding a cure/better treatment, donating, and whatever else you believe supports the cure. By briefly stating what you have done to support herpes research helps everyone see how much effort is being put forth.

What I have done today!

1) Sent letters to my senators, congressman, US president, and my state governor.

:call:

Please let me know how you have contributed to making a difference for herpes sufferers...

Link to comment
Share on other sites

1. I have signed petitions

2. I have posted the petition links on other herpes related forums & some yahoo groups

3. I have sent emails to local and also US magazine publications (using the email addresses provided by OneBrightDay)

4. I send weekly emails to senators etc

5. I brainstorm with other members in this forum of other ways to contact various media outlets etc to advise them of this virus.

6. I have emailed Vical, Agenus, Profectus BioSciences, Amgen and others.

7. I have posted my story on the LifeSciences page

http://www.lifescientist.com.au/article/403643/experimental_dna_vaccine_gives_full_protection_against_herpes/

8. I have donated.

I urge everyone to please sign the petitions found in the 'Petition-Letters-Grassroots Movements' section of this board and to also continue writing letters to your senators, congressmen and the US president. In addition to this, please donate. I appreciate that not all of us can do so but if you order lunch out each day, how about making lunch from home for a while and with the money saved donate to Professor Cullen or Professor Bloom. Every little bit counts whether it's $5 or $100. Thank you all for your support. Let's work together so that we can get closer to a cure!

Link to comment
Share on other sites

Drop a few lines and tell us how you are being proactive in the h community.

I have over a dozen letters sitting on my desk, waiting to be mailed. Addressed to Bill and Melinda Gates, my governor, us representative, and etc... A few letters are sent weekly.

I created a fb account to help raise herpes awareness. This includes current researches and ways you can become proactive. I post petitions on as many fb pages allowed per day. (I took a week break from posting petitions).

Link to comment
Share on other sites

Today I sent another round of emails to the editors of various magazine publications (refer to post from One Bright Day who provided all the email addresses). I also sent emails to some local magazine publications as well.

I also emailed BioAlliancePharma to find out more about Sitavir and if they reply I will post on this board. In addition to this I also emailed Aicuris to find out if they have any further updates re AIC-316 and if they are considering applying for Fast Track status.

It would be great to hear what others have done as well as I am sure many people are being proactive but are just not letting us know :-)

Link to comment
Share on other sites

I have also signed all the petitions posted on other threads on here as well as sent letters to my senator/congress person.

I also just recently sent an email to a sexual health and gynecology radio show asking to please talk about any recent medical research and herpes awareness. I also mentioned to them that herpes is not even part of a standard std panel. I received word back from one of the doctors stating she will be having an std expert on her show to address this as one of the topics so if anyone would like to check it out and has satellite radio she stated in her email back to me it will air Jan 30th at 12 Eastern on SiriusXM channel 81 (Doctor Radio). That's all I got.

Link to comment
Share on other sites

I have also signed all the petitions posted on other threads on here as well as sent letters to my senator/congress person.

I also just recently sent an email to a sexual health and gynecology radio show asking to please talk about any recent medical research and herpes awareness. I also mentioned to them that herpes is not even part of a standard std panel. I received word back from one of the doctors stating she will be having an std expert on her show to address this as one of the topics so if anyone would like to check it out and has satellite radio she stated in her email back to me it will air Jan 30th at 12 Eastern on SiriusXM channel 81 (Doctor Radio). That's all I got.

Thanks much for your input.

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.



  • Donate

    If Honeycomb has helped you, please help us by making a donation so we can provide you with even better features and services.

  • The Hive is Thriving!

    • Total Topics
      72.1k
    • Total Posts
      486.3k
  • Posts

    • sgt98
      Hey @WilsoInAus ok thank you, I will do my best to move on and stop trawling forums haha. 
    • WilsoInAus
      Hey @sgt98 but there is no feasible infection or outbreak to suppress and antivirals do not suppress an initial outbreak in any event 
    • sgt98
      Thanks @WilsoInAus I understand apologies for this but the only other thing I am worried about is that I did take a course of Famvir on day 1 as I felt like I was having an outbreak of cold sores and am worried that has suppressed the initial outbreak genitally 
    • WilsoInAus
      Hi @sgt98 it is not feasible to obtain a HSV-2 infection from receiving oral sex - only HSV-1 is feasible but you've already got that and immunity from any further infection with HSV-1. You do not need any further tests for HSV. You're feeling regret, try to forgive yourself and calm down, let the rational take over. You know the answer here and it won't be long until you believe it too.
    • WilsoInAus
      Hi @NerdP423 and welcome to the website. You raise a lot of points and I think the best way to address your concerns is add some comments at each key point. I've copied your note again below and added these comments in square brackets. I appreciate any insight (even speculation) as to what has been going on with me. I'm a 37y/o M. I last was intimate with a new partner on 2/11/2022, and a few days later started having a huge amount of discomfort in my face. [The first thing that happens though is that herpes causes lesions or at least some skin based disruption. Other symptoms are then related to the actions of the immune system responding to the virus. Without lesions, it is highly questionable that the ailment is related to herpes, yet testing is useful if you have concerns as you have done so.] About a month after that [herpes causes issues within days, if the first 'symptoms' are a month later - its extremely unlikely they are related to herpes], significant discomfort downstairs, however every test I have ever taken for HSV 1 and 2 has been negative. Here are the details: Face: Previously, some significant tingling and itching on the right side of my mouth, lips and chin (still there, but milder) [herpes does not cause general tingling and itching, it can cause a reasonably concentrated feeling of itch/throb from which a herpes lesion appears within hours]. Occasional hot flashes near my right eye, cheek and ear [herpes does not do this, it may be a immune response to something, or stress]. Sometimes it will feel like the skin is crawling on the right side of my face [herpes does not cause a general crawling sensation]. Never seen anything that looked like a traditional cold sore [that's extremely telling, even people with associated atypical symptoms will have experienced herpes lesions]. Occasionally, the left side of my face will have a momentary feeling of skin crawling, but it's so mild that I am not really worried about it. Downstairs: Thankfully, most of these are now milder than they were before. Occasional momentary pinch of pain at the base of my genitals. [herpes does not cause a general pinch feeling.] Aching pain in my boxer area (groin, leg folds) [nor this] Occasional feeling of cold in my boxer area, butt, or lower back. ( also in my shins and occasionally even my arms) [nor this] On 4/30/2022, I had been in discomfort for almost two months. I scratched an itch, noticed it hurt, and then checked - I did have an open ulcer down there. Took myself to the ER to get swabbed, came back negative. [If this was a PCR then this will be very conclusive.] Practitioner said it may come back negative because it was already open. However the lab report noted that it definitely didn't look like what you'd expect a typical first herpes outbreak to look like [how would the lab know??]. All blood tests negative so far. I had two western blots, the second one was nine months after exposure. [Two negative Westernblots!!! Many that's real convincing]. All other swabs also negative. I went to urgent care, because I know the timeliness of when the Swab is taken matters. One time, a swab was not done, because practitioner said it was folliculitis and wouldn't swab it (It was at my belt line). [Belt line is highly unlikely to relate to herpes.]   A blood test revealed I had low-ish B12 (technically in range, but at the very low end, especially for a man of my size). I had a series of B12 injections, and I am taking a B12 supplement. I am not taking any lysine or arginine at the moment. I was taking the Arganine to see if I could induce an outbreak. [This is irrelevant, there is no known linkage between herpes outbreaks and arginine/lysine intake - its a myth - and B12 infers nothing.] I think what I am asking is - has anyone here ever repeatedly tested negative over and over again over long period of time, before getting a definitive answer, be a positive test, or something else? [The answer to this is: Extremely few people with a HSV-1 infection and even more rarely HSV-2 test repeatedly negative on Westernblot and actually carry the virus. Of the cases that I know of that had delayed detection by a swab and negative blood tests in the meantime (and that's only 3-4 cases), they had some form of lesions within days of infection but did not obtain a swab for various reasons and then obtained a positive swab of a subsequent lesion with the record being 11 months later. A couple of the cases did have some 'background' symptoms they thought might be related to herpes but that isn't ascertained and some did not have any unusual symptoms at all apart from the lesions. Hence as you did not have lesions around your mouth or lips within days of the last sexual encounter as is exceptionally common for a primary oral HSV-1 infection, that pretty much rules out herpes orally as it is. The fact that you had no genital symptoms for a month also rules out genital herpes. I am not aware of anyone at all who has genuinely gone on to test positive by swab or blood in your specific circumstances. There are hundreds if not more than a thousand experiences on this website alone that are similar to yours that are truly negative for herpes I'm one of them!]  
×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.