Jump to content

This is why we should stand up and fight!


Recommended Posts

Hi all, 

Last night @SupermansJustice stood up and fought for all of us, I thought you all should see this chain of tweets (pictures attached - you can also go on Twitter to view the full thread). This is the reason we need more people standing up and helping us fight. A specialist of infectious diseases spoke out against the tweets being posted about routine testing. I will say that again - a specialist of infectious diseases said that there is no need for routine testing. At one point even asking how you would test people who don't show symptoms. @SupermansJustice went  into a debate with this doctor and was able to point out the facts, showcase studies and eventually led the doctor to change his thinking and the doctor saying "It's important and underscores a lot of uncertainty we have."

The uncertainty is clear, if even a doctor that specializes in diseases doesn't know the facts - how are we ever going to see a change in our lifetime? By changing one persons mind at a time, by reaching out to as many people as possible, by stating facts with logical and reasonable communication, we can make a serious difference. 

We need more research, better testing, and routine testing! 

Stand up with us - we (people with HSV) are being placed on the back burner. I know of no other disease where I'm being told that what's happening to me isn't a big deal, and it doesn't matter. It's because it's constantly being swept under the rug and we are being ignored. 

Sign up - create an anon account on Twitter and help spread the word!! Follow @TheHopeIsNear he is fighting for all of us. 

 

@OhFuckMyDickHurts @Lisajd @Hansje @Owningit @GlitterDx @Rational Vaxxer 
 

Tweet convo1.png

Tweet convo2.png

Tweet convo3.png

Tweet convo4.png

Tweet convo5.png

Edited by Lauren401
Link to post
Share on other sites
  • Replies 106
  • Created
  • Last Reply

Top Posters In This Topic

  • MoniqueLow

    18

  • Lauren401

    16

  • useless

    14

  • K_Sock

    12

Top Posters In This Topic

Popular Posts

Hi all,  Last night @SupermansJustice stood up and fought for all of us, I thought you all should see this chain of tweets (pictures attached - you can also go on Twitter to view the full thread)

Superman justice is a real life hero. God bless you. 

Posted Images

4 minutes ago, useless said:

I admire you and others that are fighting for all of us. I wrote to Bill and Melinda Gates today. poured my heart out. Even asked if he would consider investing in AuRx.

I'm doing this today!

Link to post
Share on other sites

I can't think of anyone else to write to maybe Richard Branson.  He might invest in AuRx. He is a business man after all. Can anyone think of anyone else ?

  • Like 3
Link to post
Share on other sites
valleynovascotia

Better testing is good cause many don't know they have it. Also I think we need to stand up and fight for a cure.

Edited by valleynovascotia
  • Like 3
Link to post
Share on other sites

only way to push forward is for people to come out and be public about hsv. its whats keeping it stigmatised and why people keep hiding away. the bigger picture is pushing for a vaccine , but the FDA and goverment bodys keep suppressing hsv as an issue and keeping us down with a stigma created by pharma. sick world we live in. who else can we target via solcial media ?

Link to post
Share on other sites

Nice letter from @SupermansJustice.

Couple of suggestions to make it better..

1) The phycological harm argument and "Is that done for any other medical condition?" - It's interesting....but the same avoidance is largely true for tests to determine risk factors of ALS, Alzhemiers, etc (of course, these tests are also avoided because they can't predict with 100% certainty....but it's well documented that neither can the igg)... Further it's true that EBV, CMV, HPV and others are not routinely tested for either.  NONE of those aforementioned diseases are tested for until a patient has symptoms; just like HSV...and all of these diseases have one thing in common which negates the need for testing; there are not good treatments or a cure (or Doc says: 'there's nothing we can do for you').  The recco is just to remove "Is that done for any other medical condition?"

2) We request 'acceptance' - what's meant by this? What kind of acceptance? Are we seeking the kind of acceptance that women, african americans and homosexuals have all fought for and largely won? I would suggest that we're more-so seeking respect...or dignity...

 

Link to post
Share on other sites
3 minutes ago, fixme1 said:

only way to push forward is for people to come out and be public about hsv. its whats keeping it stigmatised and why people keep hiding away. the bigger picture is pushing for a vaccine , but the FDA and goverment bodys keep suppressing hsv as an issue and keeping us down with a stigma created by pharma. sick world we live in. who else can we target via solcial media ?

There's a doctor with hsv2...Dr. Sheila Loanzon! She could help!

  • Like 1
Link to post
Share on other sites

I am tired of hiding but there's  nothing I can do.  Sometimes I feel like a criminal walking around with a secret of a crime I've committed.  Hiding my true self and what'sgoing oon inside of me. My head hurts from thinking about this all the time. Is  it ever going to end.

  • Like 3
Link to post
Share on other sites
1 hour ago, useless said:

That's easier said than done. I'm afraid i have a family and it could affect them. Being heard is just as goodas being seen. 

People think into it alot. End of the day it's a skin infection, not a contagious life threatening disease. We are made to feel bad and wronguns because of pharma company stigma, reality is most people haven't slept around to acquire this virus and we should never be ashamed

Link to post
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.

  • Single ➵ You may like to try the Dating App

  • Similar Content

    • Dubneedshelp
      By Dubneedshelp
      Hey guys. I was just diagnosed with genital herpes after a visual examination. I've had all the possible symptoms - fever, chills, aches, sore throat, bumps on vaginal area and discomfort when peeing. I'm waiting to find out what strain I have and I have so many questions/am just feeling so terrible so would appreciate any help. 
      1: Does it really matter which strain you have? Should you still disclose this diagnosis to potential future partners? 
      2: Has anyone noticed small bumps on their fingers from the infection? Are these contagious? I have small bumps on one finger that haven't broken but are uncomfortable when touched. 
      3: Is it possible to have infection in both the mouth and genital area at one time? Most of the stuff I've read has said if you have bumps on the vagina then it's genital herpes but my throat is so sore and seems to have bumps way at the back - no sores yet. 
      4: Linked to Q.3, if I have genital herpes can I spread infection by kissing alone?
    • HodJ311
      By HodJ311
      I had sex with a girl I didint know very well and woke up with 2 medium size bumps the next day idk if it’s herpes or not thinking about getting tested it’s been 3 days .
    • name12
      By name12
      hello,
      i was here in june with what I thought was maybe an oral ob.  At that point it had been post exposure by 4 months and i ended up testing neg 1&2 igg.  i just tested again and was neg for both, no new contact. 
      Monday night my nose all of a sudden became EXTREMELY itchy in just one nostril.  the next morning and day all of these white bumps popped up all over it.  I put abreva all in my nose.  this morning i woke up and it was irritated but all the white bumps were gone.  I calmed down but then i just looked and it looks like there's little erosions inside my nose now.  The dr refuses to swab.  Does this look like herpes?  I'm attaching pics of my nose with the blisters and with the erosions, I circled the erosions.  Also including a pic of my lip from june for reference. 
       
      Sorry for the image quality of my nose, one is scarily detailed and the one of the bumps is very blurry.  hard to get a good nostril shot as it turns out
      maybe i have a false neg hsv1 test result?
      Feeling so defeated it is frustrating to not know what is going on and i feel humiliated by the drs who think i am being crazy for suggesting herpes.



    • Shanshine
      By Shanshine
      How can GHSV-1 be transmitted genital to genital? How rare is it? 
    • Shanshine
      By Shanshine
      This question has been eating me up for some weeks now, but I am wondering how can ghsv1 thrive in a part of the body it isn’t usually suppose to show up on? If HSV1 typically causes cold sores and the virus attacks a specific ganglia area, how can it survive else where? This makes me wonder are the types of HSV important since you can get in orally or genitally? 



  • 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
      71,655
    • Total Posts
      484,800
  • 0_unsure-if-it-is-herpes.png

    Nervous about dating with herpes? Skip "the talk" and browse profiles here.

  • Posts

    • vannen2
      Thanks for the answer, Wilson. Sorry for taking long to come back here, didn't really have the time to sit down on my computer and I've been trying to not think much about it.  I took a blood test and I'm waiting for the result. As of now, the redness covers a slightly bigger area and I feel some occasional itches. It definitely isn't herpes but at this point I've already accepted I have something, nothing like this ever happened before and honestly? If anything comes positive, I deserve it.  Maybe I'll come back with a current picture for the people that may end up in this post in the future. I will come back with the results as well, of course! I looked a lot into this forum and other people's stories have certainly opened my eyes to many things in life, so I'm thankful for that too!
    • WilsoInAus
      No problems @AlexUobby those queries are reasonable concerns and I hope these answers give you comfort. Every test has a minimum value (including between HSV-1 and HSV-2 from the same blood sample). This ranges from 0.01 to 0.80 in theory, but in practice more like 0.01 to 0.40. Any value in this range is very likely a minimum value and means an absence of the antibody being tested for. Hence if you get say a 0.3 value on this upcoming test, then the correct interpretation is that it is a minimum value and means no antibodies at all - negative. IgG testing is far from perfect in terms of them being a little too sensitive and generating false positives. This is because although they try and find the best antigen that attracts only an antibody specific to the virus being tested for, this is imperfect and other proteins may be present that attach to the antigen. This is true for all IgG testing. You will also find a very large number of people on this site whose low positives transpired to be negatives.
    • AlexUobby
      @WilsoInAusI know, and I have read a lot of posts recently. And I think I know it better, and it won't just come out on my hand. And I am planning to do another Roche test. The result may come out next week. If it was still positive, does that mean I have herpes? I mean the baseline was 0.06. Or I understand it wrong? And there are still one thing that concerns me so much. In the 6 week test, my HSV I igg was 0.02 and my HSV II igg was 0.06. I know they both were low. I was a little worried that HSV II igg might be on the process of seroconversion, since the HSV II igg was three times large than the other. I know it wasn't logical, but worried. I just don't quite get how they suddenly jump to 1.2 even 1.9 after 6 weeks if there weren't seroconversion. And I saw a lot of people in this forum, and their value almost stay in the same level. And that really concerns me a lot.
    • WilsoInAus
      Hello @Lou_95 and thank you for taking the time and having the bravery to come forward to seek help. I hope you find some assistance and find solace.  What has occurred here happens to many couples and it is important to note that it highly likely that this has absolutely no questions surrounding fidelity etc. The first thing to note is that your assumption is the other way around. When a person has their first herpes outbreak, then it is extremely likely that they have been just infected by the other party. Herpes does not wait around taking its own sweet time to cause an outbreak. When first infected, you are in a sense 'defenceless' against the virus so havoc can be wreaked - well the lesions that you experienced. If your partner is quite sure they have not been infected genitally with herpes in the past, then the most rational explanation is as follows. Your partner may well have an oral HSV-1 infection that causes oral cold sores, even if he has no living memory of cold sores! You hence may have become infected through oral sex about 2-6 days before you noticed the sores. Your diagnosis may have included the type of herpes involved, was it 1 or 2?  If my guess above is right, then you both now carry HSV-1 and cannot technically reinfect each other, or at least give your immune 6 months to get up to full speed. He is now already immune and is incredibly unlikely (if there is any chance at all) of becoming infected genitally). If this is the story, then that's kind if it for you two, no need to worry at all about issues of protection or antivirals etc. However hopefully you have the type data to proceed to that stage quickly. Otherwise it might be useful for an additional test by either you or he or both.  
    • Lou_95
      Hello, I'm new here and was diagnosed with genital herpes 2 weeks ago. I have a lot of questions but dont know where to start. My boyfriend and I have been in a faithful relationship for 6.5 years now, and I just had my first outbreak and he has never had one before. We are unsure of who had it to begin with, I assume it was me considering I had an outbreak first. I feel awkward and weird in my relationship, and sex life now, even though he was very understanding and accepting with the situation. He said it could have been either of us and there isn't anything we can do to change it.. which is true. I dont really know what I'm looking for here, maybe just some advice and others personal experiences with the same situation as myself. 
×
×
  • 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.