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    • Just a human being
      People say they want a cure but some days I wonder. If you express how stressful it’s been to support a small cohort through treatment with limited evidence most do not understand, when you ask for support or your struggles to cope with people’s trauma in treatment, or the ingrained societal perceptions, when you try to talk about the evidence it’s like you’ve done some evil thing! Apparently going against the grain to do what’s right is not worthy of human understanding or support! Expressing human vulnerability also appears to be incredibly evil! Damn! Any weakness or difficulties damn your just not worthy of care, support or respect!  After over a year in the space it’s so clear to me why there has been no progress. You are completely ostracized from the community for speaking out on this topic. How many are voiceless here too scared to speak? Yet we rarely hear from you. When you are successful you just disappear (Of course because we don’t hear from you you don’t exist! You must be a “conspiracy theory”. And even if you did then you would just be anecdotal and oh yeah that publishing evidence when they attempt to discredit it... hmm be interesting to hear the “conspiracy” stories on that one...)and I understand why as no one would listen to you anyhow! I hope for anyone reading this you get out alive lest you become a lost soul in purgatory stamping out hope for others due to confusion weaved in science and medicine.   
    • MikeHerp
      Not directly on HSV, but this general overview of where gene editing is, is a very good read. Recommend at least skimming it. A lot of excitement is building around gene editing.  https://67c5cfaa-bdc0-42a5-95c4-a822adc972c7.filesusr.com/ugd/80a6fd_a53ed12021a54292bb50ed1255e31118.pdf
    • Just a human being
      It s not really possible to ban anyone from this forum. Some people would just get back on and create a reign of terror in their wrath. I’ve seen it before. In the end everyone has to accept them and it teaches the group tolerance. Trust me I’ve been through the same feelings and I don’t want to act like I’m always Mr positive or anything cos I am Just a human being!And honestly we need to consider others welfare. They would be lost without this forum. I think if you took it away they would suffer serious trauma. It just takes a small amount of time to work around it! I have deep respect for @MikeHerp it takes a lot of work to get something like this off the ground! I think genetic research is very valuable and important!  I have duel interests human systems and health and agriculture. In the agriculture realm I’m not a big fan of say Monsanto’s brand of genetic research in application. I am a big fan of genetic research to inform plant breeding!  I think this is good work that will be insightful for humans in the future! Don’t take a few difficult people to heart! Trust me I do know it’s difficult.  I didn’t even read a single comment of theirs! Wow that’s big for me! Back to Fred Hutch....    
    • MikeHerp
      What I find interesting about this trial is that even though half life is 25 days, measurements of shedding and lesions will be done until nearly 4 months.  Maybe they expect the effect to last longer than the half life (maybe the binding effect survives longer than the half life). 
    • MikeHerp
      Message from FHC philanthropy:   “There is a small glitch with the website that we are working on. The page is still live, located here: http://engage.fredhutch.org/site/TR/PersonalFundraisingPages/General?px=1802786&pg=personal&fr_id=1574 I will need to request a new link to "fredhutch.org/hsv" for you on Monday, which is not working right now, but you can access the site from the link above in the meantime. I will let you know when that is fixed”
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worrier123

Your thoughts on the following?

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worrier123

Thinking thinking and more thinking during the time of waiting to do igg test..

I'm aware my questions might be stupid and badly worded but my minds on overdrive and has been for TWO BLOODY MONTHS so here ya go :):) ....

1) If you had TINY outbreaks, would your igg antibody count be lower? Or vice versa?

2) Why would you have ANY antibodies above 0 if you didn't have the virus, can you be exposed to it but not get it? Or if you are exposed, do you ALWAYS have it but just not get symptoms?! I'm so confused at igg tests and how they are measured!!!!!!!!! Surely 0 is negative and anything above 0 would indicate the virus has entered your body?!

3) Does the 1st outbreak usually happen in the exact location of where the virus entered the body?-E.g you got an ob at the top of your arse, even though nothing touched it? Presume this is irrelevant?

4) Would you rely on type specific igg blood tests? - Say you'd had some possible, mild symptoms and convinced yourself you had it, but tests say neg at 16 wks, would you safely get into a new relationship and not mention H? And feel confident that you could put the whole thing to rest? 

5) How likely is it that your mind could create symptoms? - Prickling, tingling, itching... if obsessing/panicking/highly anxious EVERY DAY, do you think you can cause yourself to imagine these symptoms? 

 

 

 

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WilsoInAus

Hi @gd123 good questions here, let's provide some answers to those. Testing is only one element of understanding your herpes status though. Symptoms and exposure are obviously quite important.

In your question order:

1. The IgG result index is not that meaningful. The human immune system has over 80 elements that address HSV 1/2. IgG antibodies are one of the blood borne ones. A person's experience with herpes is dependent on the collective functioning of the 80 elements.

2. Every test has a minimum value. The Herpeselect uses the ratio of the colour density of your testing well to a control one down the end of the testing tray. Every test has a minimum value that could be anywhere from 0 to 0.8 but pragmatically is in the range of 0.1 to 0.4. A negative value on this test is almost always the minimum value possible for your testing well, meaning a complete absence of antibodies. For example a result of 0.2 would almost undoubtedly be the minimum and indicate nil antibodies detected.

3. Yes, a primary outbreak will always include the dertome nerve ending that was infected and may spread internally to other nerve endings. It is exceptionally unlikely to have a primary/initial outbreak emerge only at a nerve ending away from the initial infected one.

4. Yes correct, IgG testing is very good and all that is humanly expected to undertake in order to tell a partner your herpes status.

5. I suggest stress created in your mind creates genuine physical symptoms in additional to phantom symptoms. These especially include burning, tingling and prickling.

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worrier123

Thanks so much @WilsoInAus for answering :) if you don't mind me asking one more -

would you therefore say that a pos/neg for each type of hsv is enough info without finding out or dwelling on the numeric levels? (at 16 weeks)

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WilsoInAus

I understand that you are in the UK and hence would need to obtain such tests privately (as you have written about before).

I would attempt to obtain a Herpeselect test or ELISA equivalent. These tests will have numbers that are of some relevance. If they are less than 0.9 (assuming it is an index test) then that's negative, full stop. Anything greater than 3.5 should be read as a firm positive. If HSV-2 is between 1.1 and 3.5 then a false positive is of some likelihood. Sometimes labs do not publish the numbers even though they exist - common for online as there is not much by way of explanation provided.

Some HSV tests that might be provided are called an immunoblot. This does not have an index. This test binds phosphate to any IgG antibodies found in your blood - it glows beyond a threshold level or it doesn't. This test is therefore only positive or negative. The negative is conclusive. False positive issues are no different to ELISA however.

You might also be able to obtain an Euroimmun test which is marginally better than Herpselect in the sense that it has three reference points to create an index, but interpretation in the end is the same. This test reports results as Ru/mL and >20 to 25 is considered positive.

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worrier123

Thanks @WilsoInAus. You are correct. I just emailed the online company I intend to order with and they said they use ELISA which is promising. I'd have to do it online because getting the test in a clinic in my area is double, sometimes triple, the price. They got back to me within a couple of hours though so they seem pretty helpful! Thanks so much for explaining, everything's a bit clearer now with regards to blood tests. 

 

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