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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! After over a year in the space it’s so clear to me why there has been no progress. You are completely ostrisized 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 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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Imaginaryexit

Eczema herpictum and disseminated herpes hsv1

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Imaginaryexit

Is there anyone on here that has these conditions or complications with herpes.  I would really like to hear from you.  Im pretty sure this is my problem.

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WilsoInAus

Mate for someone with an established oral infection of HSV-1 from childhood... chances of this... zip!

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Imaginaryexit
47 minutes ago, WilsoInAus said:

Mate for someone with an established oral infection of HSV-1 from childhood... chances of this... zip!

I have no proof that I had this from childhood. Even if I did, perhaps the body forgets, kinda like how people need booster shots for shingles.  That makes complete logical sense.  I have a track recorded of unusual things happening to me.  All my research seems to point to this.  My symtoms mimic coaxsackie but it has been to long to have continued issues still to my knowledge.  When this all started to happen a I should of gone to the hospital.  I'd probably have a diagnosis possibly when it was at its primary outbreak of whatever.

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WilsoInAus

I think you've let your imagination run riot with some googling!

Remember as with anything in life, the simplest, most logical and most likely explanation is most often the reality.

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Imaginaryexit
On 6/20/2017 at 8:23 PM, WilsoInAus said:

I think you've let your imagination run riot with some googling!

Remember as with anything in life, the simplest, most logical and most likely explanation is most often the reality.

Listen i appreciate your positive outlook for me.  I really do.  Unfortunitly, I am being tortured daily with vesicles on my scalp, and rashes on my hands, mouth and nose, in my ears, forarms, all itch, all look like they want to form something but reside and just continue to be inflamed.  The rashes don't scab over ever, but I understand this can happen. I am at the point that I'm under great distress and I need a doctor to prove me wrong but I don't typically get a open sore around the rashes except my scalp.  What i do need though, is people to believe me that something is terribly wrong, otherwise I wouldn't be going around like a chicken with its head cut off.  My symtoms are very real, can be very slight to severe, but consistent annoyance breaks you down mentally.  Yes google can be frustrating and I am very well of the concept of im going to die from everything I look up.  HSV is the only thing I have found in all my research and coaxsackie that resembles my problems.  I am working on getting a infectious disease appointment.  Could i have a co infection of Lyme related disease.  Maybe.  I seem to have a lot of trouble with the herpe class viruses though.  I had shingles last year for three months across my face and scalp that gave me terrible pain and nerve damage.  5 years ago no one could figure out what was wrong with me, got pale all the time, tired, not feeling well.  Kept asking the doctor if it could be ebv, he said no you don't have the typical symtoms and wouldn't testfoe it.  Went to a rheumatologist and he said sounds like ebv without the physical appearances.  Went back to primary and demanded the test for a 5th one and sure enough it was ebv.  Couple years went by and I lost my hearing instantly, I will skip the details but I lost that permently and they tested for CMV and that came up positive.  So these viruses reek havoc on me.  Maybe the other two actually make me immuncompromised and the term immuncompromised is misinforming only to HIV.  Anyway I believe I give warrant to this class of viruses are way under evaluated in arms of what they can do and what happens if you have a couple, not to mention my adipose tissue disorder.

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WilsoInAus

Your symptoms sound terrible. You are doing yourself a great disservice by trying to self diagnose. Nothing you suggest really makes a lot of sense. Please see a new doctor for further opinions. What else can you do?

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WilsoInAus

How about you actually read some of those books and actually try to help people. You write the most atrocious posts ever seen on this forum and you have the arrogance and audacity to write a post like this. Few people have done more to sour the website than yourself.

I write up to hundreds of responses a day to people who need advice and help. I am doing the best I can. My responses are spot on to the situation required.

Please reflect upon why it is you felt the need to write a post like that and what it says about you.

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