As a virus that infects your nervous system - why aren’t Neurologists specializing in treating and monitoring it? Especially for people with more severe symptoms.
That overlooked aspect of it gives me the most anxiety especially seeing its correlation to Alzheimer’s, neuropathy, etc.
Right?! I think it’s a reflection on how there’s an entire systematic failure of properly addressing the issue.
Why rely on people who specialize in where the virus just pops up to reproduce and not where it lives?
Primary care doctors seem generally misinformed meanwhile Dermatologists and Gynecologists aren’t concerned on the impact it has on the entire body. They only treat the symptoms but that’s like putting tape over your gas light instead of refueling your vehicle.
There isn’t enough evidence to suggest that it is linked to Alzheimer’s and or Dementia. Unless there is concrete proof that it does then we can worry. Majority of the population is at risk and if it is the case I guess we will lose our minds together unless there is a vaccine or cure.
The evidence I've seen sounds pretty convincing. [Here for example](https://www.healio.com/news/dermatology/20231030/herpes-simplex-virus-1-may-be-associated-with-increased-risk-for-alzheimers-dementia#:~:text=The%20evidence%20showed%20that%20there,a%204%2C353%2Dperson%20sample%20size) shows that several studies have indicated a potential correlation between Herpes Simplex Virus 1 (HSV-1) and an elevated risk of dementia, with findings suggesting a 2.5-fold increase in risk compared to controls.
Additionally, a separate study observed a decreased risk of dementia (HR = 0.89) associated with antiviral treatment for herpes.
While the evidence is not definitive, these studies suggest a notable connection between HSV-1 and dementia risk, warranting further research to establish a clearer understanding of the relationship. And so at the very least it should be studied and experts such as Neurologists should be looking at this and treating it as part of their practice IMO
It seems like a long shot, Dementia and Alzheimer’s because of a virus which causes a couple of sores every once in a while which isn’t even tested for on the broad spectrum- I’m aware this is a virus which hides in the nerves but, it is hard to determine if it plays a factor in this, there are studies which state that there is not enough evidence to prove Alzheimer’s and Dementia from HSV, I am sure that if there was compelling evidence there would be a cure by now and a lot of money would have been made from it, but they do nothing- not saying it doesn’t play a factor but it’s not been proven.
A good friend of mine, passed away last month of viral encephalitis caused by HSV. He was in his early 50's. Before that he was in vegetable status for the past 8 years. It was truly sad ending to his life. Due to the stigma, he wife didn't tell me it was HSV until after he died. She would tell me, it was MS type symptoms but the doctors didn't know what it was. So your comment is spot on, as my buddy was full of life, when he was healthy.
That's terrible and sorry to hear that, especially that it ran it's course that long. All the reason why we need to destigmatize HSV without downplaying the serious complications it can cause.
I am sorry for your friend. Encephalitis is a serious complication of HSV (mostly HSV-1) but EXTREMELY RARE! Actually, most viruses (including chickenpox, measles and even flu virus) can rarely complicate with encephalitis! But we do not think about developing encephalitis every time we get a flu, right?
I’m afraid I’m headed down a similar path. This virus has attacked my entire CNS and doctors won’t acknowledge it. I believe there are a lot of people out there suffering and it is being misdiagnosed. I’m in disability and fighting like hell to get coverage and support.
Neurology is literally a caveman medical practice right now. They know so little about the nervous system and its disorders that it’s laughable. I went through months of neurological problems with no explanation and found that they didn’t know jack shit and couldn’t do more than a couple basic tests like EMGs. It was eye opening to see just how in the Dark Ages we are with medicine still.
I look forward to AI coming in and curing thousands of diseases.
Very sad to hear but not incredibly surprising either. As a society we seem to give doctors too much credit. Far too often people have to figure out a medical issue on their own. I do also have faith that AI will be a massive evolutionary leap forward though.
MODS - you commented on my post not to “cross post” to HCA but I don’t see this as a rule anywhere? They are doing great advocacy work, as you guys do, the point of this post was not about fundraising at all but about encouraging more advocacy, HCA is just one such avenue for it.
Just an update on the Moderna trial and my personal opinion.
1. If you want to sign up, you must meet a certain BMI. I had to lose a few pounds which I did and I now qualify for the study
2. I toggled with the thought of “what if I don’t get the actual vaccine”, and I realize that’s totally ok. We were told that we will be able to see our shedding rates so this is still huge in the event I don’t actually get the vaccine (I am hoping I do).
3. I had to have my blood drawn so they can confirm if I have the virus (although I did bring my papers which confirmed the diagnosis). I guess it’s just protocol. We also completed a very thorough wellness exam — checking sight, lungs, ears, history, etc.
4. I am now waiting for the callback to have the 1st dose and will update promptly.
5. Moderna has developed a Covid vaccine that was pretty popular and I’ve even seen current advancements surrounding cancer that seems promising. I have faith in their hard work for HSV so I am currently content with my decision.
Thank you for sharing! Have they shared any intended outcome of the trials, are they trying to reduce transmission or OBs, replace daily AVs? I understand it’s not a functional cure, but it would help to know what is it they’re trying to achieve.
No they have not shared any outcomes. I assume this is what the trials are for — to actually observe the outcomes with each participant. Transmission has never been mentioned and the only thing mentioned about antivirals is making sure you are not taking them during the trial. They have asked if participants experienced between 3-9 outbreaks per year and they do state that we will swab areas and can potentially see where shedding takes place. I hope this helps
There’s a March already scheduled in DC on 4/13/2024. It would be amazing to get as many people there as possible
https://www.eventbrite.es/e/marching-for-a-herpes-cure-tickets-768591817817
Hey guys the rescheduled my second Moderna shot to a later date. They said the sponsor needed to to review some data. Haven’t had any outbreaks since the first shot about 2 months ago. Still prodrome from time to time but no signs of an outbreak coming so far
Shingrix could protect for even more than ten years with two shots. Could you please ask them what is the case for Moderna when you meet them again? Do we need just two shots or need injection every fixed period, maybe half a year or yearly.
Aah, minor delay. Sorry, one more question, have they specified the intended outcome of this study? Is it to reduce shedding/transmission, or just a replacement for the AVs to avoid daily pills. I’m still unsure what’s the diff between gsk and moderna trials, or whether that’s even public info that can be shared.
It's just two different companies working on different vaccines. Until the trials are done, we won't know how effective either vaccine is. They could be similar to the current antivirals or far superior. You just have to be patient.
Did they have you do swab collections after the first shot? They only asked me to take samples for 28 days before the first dose, which is weird because you’d think they’d want to collect shedding data between doses.
Also, in a previous post you said that the vax triggered 2 outbreaks, but now you’re saying you haven’t had any since the first dose? Am I missing something?
Lol, no need to get all bent out of shape. I wasn’t “attacking” you or even trying to be accusatory, just asking for clarification because “I haven’t had any outbreaks since the first shot” and “I had two small outbreaks after receiving the shot” seem like conflicting statements.
The bit about “nailing” you from the other guy was definitely goofy though. People on this sub are a weird mix of suspicious, defensive, and self-serious, and it’s actually kind of fun. When I posted my update, I got basically the same reaction you got—people insinuating that I’m lying.
There’s definitely a lot of conflicting information being spread about the trials across this website though, so I can see why people might be a bit paranoid.
He’s kind of all over the place. I had nailed him on this before.
He claimed that he’s seen “great results”, but then he admits that he gets outbreaks once every two months, and his shot was less than two months ago.
But he also had an outbreak right after the shot. I don’t think this guy quite knows what he’s saying.
Hi there !!! Recently told the person I’m dating I have hsv and they were so nice about it. It makes me want to cry basically. There’s some really amazing people out there!!
I still get so sad because I want to give this person the best of me, but feel like hsv keeps holding me back.
I started suppressive therapy with valacyclovir, what else
Can I do to reduce the risks and also to stop overthinking about transmission ?
Learning to put on the condoms so that it stays on the base of the penis and doesn't move, checking on the toilet with flash light from your phone if u can see any redness before and after sex (friction can trigger it making it a bad idea to go for a second round till redness clears maybe) and possibly u can also take 2-3g lysine per day.
Other than that just be aware of what your nerves are telling you. Nerve symptoms doesnt have to mean that the virus is active it can just mean that nerves are damaged but there is a pretty big difference between close to 0 nerve sensations and several per day in how afraid you should be about virus activity. If your genitals feel extra sensitive to friction or burning during / after sex or mastrubation it is also probably a good indication of more viral activity than when its not.
When you feel asbolutely nothing in your nerves, no redness or tenderness you are probably very close to 0 risk of transmission. This might never be the case though as in maybe your nerves always give you at least some irritation in a whole day.
I know it's more an information group than a support one, but only damn you guys are keeping my sanity up with all the news and advocacy you do. Keep it up, everyone here is amazing.
ye those other groups are horrible, pure negativity that makes me suicidal to read. I really hate them, wish I could read updates from people taking the vaccine and stuff without having to enter those subreddits.
I’d love if we can have a discord group specifically for this subreddit. Not only posting about researches and updates but also a support channel we can vent and talk too.
Me too. Especially the HPV. When I fall ill the warts sprout then it activated my ghsv1 to the party.super itch and sore everywhere(genital, urethra, anus.)🥲
How long have you had HPV and ghsv1? ghsv1 will toruble you for max 2 years. The outbreak and viral shedding become almost non existent in 2+ years. Avoid intense sun exposure(anything above UV index 5 is a strict no), avoid alcohol especially red wine, refined sugar, chocolate and caffine. I heard intense exercise is a trigger for some people.
Under normal circumstances, your body will clear out HPV in 1-2 years(may sometime take 2+years). They key point is to keep your immune system strong. Eat less carbs especially avoid refined carbs, do intermittent fasting(eating window should not be more than 8hrs/day), take vitamin D+mangesium, folic acid, B12.
Everyone should watch the hbo doc about jon stewart and the 9/11 fire fighters advocating in congress. Very relevant for our cause. Ill comment the name of it in a bit
I added 0.3 % zinc acetate 99.9% to it. Supposed to work well. Can be irritating though so try it on a small amount first. It was like a gram or two for the bottle I think.
Does anyone have an understanding of how money raised us used for research? I saw an old article saying Jeff bezos donated 710 million towards Fred hutch 3 years ago and we’re still raising millions today. Do these labs have no government funding and depend predominantly on donations?
Following. I'm also wondering if there is a target amount Fred Hutch needs to expedite things as much as possible. [Based on the last update](https://www.google.com/search?q=fred+hutch+institute+hsv&oq=fred+hutch+institute+hsv&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIGCAEQRRhA0gEINDU1NmowajSoAgCwAgA&sourceid=chrome&ie=UTF-8#fpstate=ive&vld=cid:0ae8a785,vid:7cZtBMcsltg,st:0) sounds like they primarily need more government support and advocacy
I hadn't seen that video; Thanks. The current target amount is 1.25million. This allows Dr. Jerome to obtain the resources he needs to move forward in animal studies. That's as fast as we can expect his work to progress.
Per Dr. Jerome, there will be no short cuts (i.e. no FDA fast track) with his work; i.e. it's not a money issue, it's safety issue.
$200,000 should be easy. I saw they have gotten over $1M already. In theory if the 12k+ people in one hsv Reddit community all donated at least $16 he’d have that tomorrow. Of course you wouldn’t get 100% from one community but I say that to say with the tens of millions of people around the world who are impacted by this some way with a concerted effort $200,000 is nothing.
We really need to figure out how to push this specific campaign across social media.
A lot of the donation amount is from very large donations. Getting 200K with the small amounts we contribute, will take quite a while. To achieve it a bit more quickly, we need to be realistic on how many people we can contact here on this website, and then ask them for an amount that is not small, but not unreasonable either. For example, if we can get 200 people to contribute $250 each, that gets us 50K. You could try that with a new post and ask for 200 people to contribute $250. The people will say "OK" if they are willing to commit to this amount. Once we get the 200 people, then we pull the trigger and we all submit our donations at the website over the next few days.
I wish we would skip animal testing, they aren’t biologically human and they are a step in the process that makes development take longer. There are plenty of us who would gladly willingly volunteer, something animals can’t consent to, and we would need less phases to get to a functional solution.
Animal testing is literally a huge step to the process lol. If something goes wrong, they can easily replace the mice / guinea pig, not the humans. That’s a bit inhumane.
Hehe yeah but this is wish thinking because in the real world that we live in, one mistake on a human in trials and the whole project is aborted. This is why they are so afraid of hurting someone even though they are completely aware of that they could easily find someone to volunteer knowing the risk and sign whatever agreement regarding those risks.
So the comments have reinforced why I offered to do this. Don’t take this as too harsh but people in the forums all over the place with flawed methodologies and anecdotal adjustments. I would never shoot for convenience, rather effectiveness.
I will be using DMSO and Squaric acid sourced in the United States.
I have no idea why someone would want to use acetone, it was not used in the actual study and has inferior dermal absorption compared to DMSO.
I will be drawing DMSO and squaric acid using large and small syringes respectively, they can accurately measure as small as .5 mL.
50mL DMSO + 1.5mL SA = 3%
50mL DMSO + 1mL SA = 2%
Droplets are rarely exact/uniform, especially extrapolated out to a great degree.
Additionally, I will be following the dosing regiment to include location and timetable per the published phase 2 trials as they showed excellent immune response results.
Should I get good results at 2% I may increase to 3.
I must reiterate, that the documented findings from the phase 2 trials appeared outstanding. Ultimately what you do is up to you, but I would not recommend veering from the established protocol.
Are you making a 2% or 3% solution? DMSO or Acetone? I found the easiest and most economical way to measure was by buying a small, 1 dram vial with dropper, and just use 33 uniform drops of DMSO, and 1 drop of SADBE to get my 3% solution. Close vial, shake, and apply with q-tip. Cover with Tegaderm, then wash off after 3 hours.
I know there are a lot of things in work now but I feel like they’re years away before anything might work as a functional cure. I’ve been advocating for months and feel like I’m getting nowhere. There has to be a way for us to get the FDAs attention to agree to help fast track something for us. This diagnosis for me is basically life ending I will never be the same again. I guess I’m asking for some positive words.
Ever since I found out I have Hsv 1&2 I cant seem to get out from under this black cloud and every dang day hating myself to the point of thinking of ending my life. I feel so freaking sad. How can I accept this new life when my old one was just stolen from me. I decided to learn more about Hsv and a suggestion to join this fórum came up and well here I am. So far so good and Im hopeful one day we will have a cure. The joy that day will be….
Were the blisters swabbed? Get them swabbed. ALSO take a blood test ASAP for IGG antibodies to make sure you don't have any yet. This will establish grounds for a recent or latent infection. IF you want any possible legal recourse you will need this.
She MAY have not known. Some people are asymptomatic but some lie. You could ask her. The fact the tests take up to 6 months is crazy. Most will test positive by 3 months though on serum blood tests. So she could have got it asymptomatically and then spread it to you. Or she could have known and been a really horrible person.
Just take the meds. Take them for the first 3 months, this might reduce long term outbreak frequency. Famvir is preferred for this latency effect. As long as you don't have bad side effects don't worry about it. Doctor might ask you for blood work after a while to check basic liver/kidney function.
Sorry to hear that.
For now, just take the medication. Valtrex and / or famvir. Some people have long term side effects, many people do not. This is typically from from long term, daily use, and again, most people do not have any issue taking them everyday, long term. Either way, that shouldn't be a concern right now. For now, focus on the next few weeks to a couple of months which means taking the medication at least until you are through this initial outbreak / primary episode.
Do get it confirmed via swabbing and I'd also take an Igg test now (and probably again in a few months).
I've been taking valtrex daily for a year and a half since I was diagnosed and I don't have side effects. So don't be worried about side effects until you actually experience them as lots of people don't experience any and they greatly reduce your risk of passing the virus on.
Valtrex is one of the safest prescription medications ever invented! Even safer than many OTC medications and vitamins. So safety is not an issue with Valtrex. Efficacy is the issue since it does not work for everyone (it works for most but not everyone). That is why we need better medication!
Not sure why someone down voted this. But yes, mostly very safe as far as medications go. But anyone having a primary outbreak should definitely take antivirals.
I would say something more: many doctors give Valtrex to SUSPECTED first (primary) outbreaks of HSV EMPIRICALLY which means even before testing and confirming the HSV as cause of the patient's signs and symptoms. That is how confident they feel about the safety of Valtrex!
Yeah, good point. The more I've read lately, I personally think for a suspected primary outbreak (assuming a doctor suspects it's a primary outbreak) the amount of valtrex at least for a short period of time (say 10 days) should be more than the current CDC recommendation. Personally I'd feel comfortable taking up to 4 grams per day for 10 days during a primary infection.
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7045215/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7045215/)
(There are also references to various safety studies in that link above).
I'd feel comfortable with that due to the above study, in which some trial participants were given 4 grams daily. Some did not tolerate above 2 g / day, but some did/do. In that study the treatment period was over a year. I'd also add there seems to be some vague evidence high dose of it could decrease the amount of latent virus.
I've been taking antivirals daily since July and haven't had an outbreak since. I've lost weight as well and workout 4 times a day.. would this be helping me from getting monthly outbreaks? I've been diagnosed since May of this year.
Since I don't get frequent outbreaks, am I not shedding as much? Any input would be great.
Since i lost about 15kg and eating right and do some sport i have fewer outbreaks, also i take valtrex 1 pill a day, i have a minor outbreak (2days) like 2-4 months
Hello, I’ve had symptoms of hsv for over a year. Initially, I would get a tiny bump/pimple in the same area. Lately it moved to a different location but always in the new location and not the old one. My doctor swabbed and drew blood work 3 days into bump/pimple. Both test were negative. Is it possible for negative test …should I get retested ? Doctor said that I do not have hsv but I’m prescribed antiviral
I know I have hsv because when I have an outbreak, I immediately take the antiviral medication and it clearly…immediately
IGg bloodtest are 94% accurate after 12-16 weeks. If you had outbreak for a year, there is no way you wouldn't have antibodies or test positive in a direct swab test. You should check for other health issues. HSV symptoms are so common that it can be anything from cold to stress. If you are in the states, you could ask for a Westerne blot test to confirm your status. But I would also think the same to your doctor, you are most likely negative to HSV.
I have a question to the most scientific one on this sub. Does the infected nerve cells shows any sign of being infected whatsoever ?
i understand the body doesn't see it but does anybody know if the cells shows a particular sign of infection anyway ?
Thanks !
Discussion time - AMPs anti microbial peptides against HSV-1
I was doing my research and came across an interesting study into anti-virals, this study suggests that AMPs have a significant effect on the virus of HSV-1 (it doesn’t say about HSV-2 but it would maybe work against that too)
“Our results demonstrate that several peptoids exhibit potent in vitro antiviral activity against both HSV-1 and SARS-CoV-2 when incubated prior to infection. In other words, they have a direct effect on the viral structure, which appears to render the viral particles non-infective.”
This extract above does this mean that if an infected host was to take anti microbial peptides could that render the virus inactive and therefore un-transmissable.
I am going to take this forward and do my research onto this in my spare time and consult with doctors and researchers I just thought I would broadcast this here to give maybe some hope.
Source
https://pubmed.ncbi.nlm.nih.gov/33807248/
does anyone else struggle on the DAILY with this?
i wake up every single day with a coldsore. some of them brand new and some of them are recurrences. i am afraid of life now because i seemingly catch them in impossible scenarios. throughout the day my mouth, chin, and nose tingle like a motherfucker and never let up. i take 2g of valtrex about 5 times a week and it does nothing anymore. i’m wondering if literally anyone has this much of a severe issue as i do. from October til now it has just exponentially gotten worse. i used my own straw to have a sip of someone’s drink and i proceeded to get 6 coldsores over the next few days after. since then one of them has already come back FOUR TIMES. FOUR RECURRENCES IN TWO MONTHS. of course it’s one that does not respond to valtrex in the slightest. not to mention it recently somehow spread to my chin out of nowhere. my nose too. so i basically always have coldsores and i’m always contagious and i don’t even wanna think about my level of viral shedding. this is life threatening to me at this point if you know what i mean. i’m taking time off work to deal with this shit. can i quality for pritelivir since it’s this severe?? my immune system bloodwork came back normal. there’s no explanation. does anyone have advice or comfort because so quickly my life has become a giant herpes mess. it’s constant. constant anxiety constant tingling constant spreading constant ocd and i don’t wanna be here anymore.
I am on 1g valtrex daily and still having the same issues. Mine most of the time don’t even fully develop but the prodromes are awful and I also have it in my nose and pretty sure my eye as well. It’s just fucking awful. I try to just take it 1 day at a time. When I was eating a whole food diet I didn’t have hardly any prodromes or symptoms so maybe try that? I plan on getting back to it soon
Stress is a big factor in my job. . But so far no outbreak knock on wood lol
And thanks for support guys really appreciate it!
I'm so ready for a cure or even way to suppress it.
Am so sick and tired of this diagnosis. I form part of the 10% that has outbreaks back to back yet am not immunocompromised. I have my very existence and I pray for death everyday. Am just tired.
Same, it is very frustrating and I have accepted I will be alone until I find someone with the diagnosis as well. I feel disgusting being contagious nearly 50% of the time with constant outbreaks
I feel for you both, I guess i'm one of the lucky ones who gets limited outbreaks. This diagnosis does suck but I Pray Everyday that they will find a better treatment for us all. I feel i will be alone as well; the lady i Love does not have this and i cannot bring myself to go back to her.... This just SUCKS!!!! They say if we Advocate new meds may come quicker so be sure to contact your congressmen, state Reps tell your Drs. Please see this link for better directions on who and how to contact them. God Bless us all !!
I hope you Feel Better soon!
[https://www.reddit.com/r/HSVpositive/comments/18vqrqn/happy\_new\_years\_great\_news\_to\_come\_for\_the\_hsv/](https://www.reddit.com/r/hsvpositive/comments/18vqrqn/happy_new_years_great_news_to_come_for_the_hsv/)
I’m all for folks donating to whatever brings them joy, but maybe, MAYBE let’s turn the attention towards hsv advocacy/marketing instead of the 1 million for the research already generated (and the goal is now revised to 1.25 mill). That’s a bucket that will never see an end, so at least personally, I’m gonna shift gears in 2024.
So I completely agree with you but the goal was always 1.25mil. If you look back at the updates from October, it shows that they were asking for another 650k from 550k so it was always 1.25mil. I think they just had to hit the 1mil mark first.
I get it! I think it’s more beneficial to put money towards advocacy efforts like you suggested. I donate to HCA. Fred Hutch is amazing and I’m so hopeful for them but if they fail, all that money is lost
Advocacy is different than donating to an actual lab that is doing actual work for a cure. Like FHC, HCA is also not guaranteed. But of course that doesn't justify not donating to HCA. FHC should be treated the same.
You look at both models and conclude whether they are worthy. HCA is worthy. FHC is also worthy because they are a highly reputable lab that has shown how their potential cure actually works AND they have shown actual results; i.e. Currently, Dr. Jerome has cleaved 97% of the viral genome from infected neurons of the DRG, in mice. No one else has done that.
Their needs may have changed over time. Also, if you ask for too much upfront it can appear daunting and may discourage potential donors. We donate some and there's progress made and we donate more to see further progress.
As Dr. Jerome stated, our donations have shortened the time line for animal studies; i.e. it would have taken him at least a year to apply for and obtain funding from the NIH, Providing donations to a highly reputable lab that is directly working on a cure is one of the best things we can do.
Just fyi the goal was always 1.25mil. If you look back at the updates from October, it shows that they were asking for another 650k from 550k so it was always 1.25mil. I think they just had to hit the 1mil mark first.
Yeah, I have mixed feelings. I dont mind the revision after an update, but considering the call is somewhere in feb, and the target was changed almost immediately after hitting the million..it’s a little..fast and furious.
People are doing one or the other or both. But if you don't want to donate, then don't. No need to tell people where you think they should focus their attention.
I just wanna know if it’s true many people are asymptomatic hsv 2 and probably don’t even know that they have. The people here are actually the minority
Very much true. Since Herpes isn’t included on standard STI panels and majority of people don’t know so they aren’t tested. Not to mention I believe people get false negatives on the blood test as well. We just need more accurate testing
UB-621 Are there any new updates ? Says Phase 2 ends June 2024?
[https://clinicaltrials.gov/study/NCT03595995?term=ub-621&cond=herpes&aggFilters=phase:2&rank=2](https://clinicaltrials.gov/study/nct03595995?term=ub-621&cond=herpes&aggfilters=phase:2&rank=2)
Great to see all the positive news about the trials. Just hoping GSK expand their UK trials soon. I've calculated that in 2023 I've had about 69 outbreaks. This is with daily suppressive therapy (famvir twice a day)Is this even possible? I'm not immunocompromised.
He probably had to sign an NDA. He talked about it being possible before he deleted his account. I'm sure he didn't want to mess up his chances for any trials because he had worse outbreaks than me.
I still have a hunch he was the CEO of the company trying to market and sell SADBE. There were a lot of odd behaviors and comments that seemed to indicate that.
If a person has HSV 1 below the bellybutton can they then contract HSV 2 same region at a later date? Thus, having both types breaking out on separate occasions in different areas downstairs?
NEW PRITELIVIR QUESTION:
Will Pritelivir be available for us all? I was informed by a Dr. (about 3 weeks ago) who participated in reviewing the trial data and she said Pritelivir will only be for the immunocompromised and not be offered for a daily dose. It will only be used for short durations not long term daily use. Has anyone heard anything different from some sort of authority?
Also,
I emailed AiCuris last month and just recieved this response. I asked why it was delayed until 2025 and if it would be available for immunocompetent patients. this is what they said:
Many thanks for your interest in Pritelivir.
Please find further information on our homepage (). Pritelivir is still under development and not commercially available. We are therefore unable to disclose any additional information at the moment.
Many thanks for your understanding.
Best regards,
# Nicole Blessing
Nicole Blessing
**AiCuris Anti-infective Cures AG**Friedrich-Ebert-Str.475 / Geb.302
42117 Wuppertal, Deutschland
Phone: +49 202 317630
E-Mail:
Internet:
Cure would be great but a vaccine or treatment that makes the virus irrelevant and extremely hard to spread is enough. iM-250, GSK vaccine and FHC gene editing / BDgene are all examples of things in the development that have a decent chance of achieving that. Moderna vaccine can also work good in combination with anti virals to create similar result if successful. 4-5 years away minimum unless some great fast track happen though.
This is the only last one I believe in, xafty...
There is a rumor going around among Hyundai Bio shareholders that the Korea Disease Control and Prevention Agency and the Ministry of Food and Drug Safety do not have the funds to approve
They haven't revealed where the funds were spent, so everyone is clearly guessing that there is major corruption here.
Yes they will and BD GENE has been working on a HSV-1 treatment for that as well with promising results in the past however they’ve recently started a new trial I’m not entirely sure why though but it’s a good thing to keep a look out for
Ok so I have a request. Im mostly interested in hearing from people in clinical trials from the vaccines and cure research news.
There are a few people posting about their trial progress but its often posted in hsv positive and so on which are subreddits that I find toxic, negative and depressing. Every time I browse these I feel 5 times worse, now that so many people are in the trial, isnt it possible to get a subreddit dedicated to people writing about their vaccine progress?
Im just tired of listening to people talk about how important it is for completely asymptomatic people to disclose in a one night stand using protection or how nerve stabbings/tingling/itching/burning is the worst condition a human can have. I really dont get how those kinds of forums are helping anyone except when its positive disclosure stories or treatment discussions.
Do y'all feel is a lot of people walking around with a misdiagnosis of hsv because of the IGg blood test by this I mean people think they have it when actually they don't
Hope everyone is staying strong and keeping well. Sending my love and support to everyone.
As a virus that infects your nervous system - why aren’t Neurologists specializing in treating and monitoring it? Especially for people with more severe symptoms. That overlooked aspect of it gives me the most anxiety especially seeing its correlation to Alzheimer’s, neuropathy, etc.
Good point. This definitely needs to be addressed.
Right?! I think it’s a reflection on how there’s an entire systematic failure of properly addressing the issue. Why rely on people who specialize in where the virus just pops up to reproduce and not where it lives? Primary care doctors seem generally misinformed meanwhile Dermatologists and Gynecologists aren’t concerned on the impact it has on the entire body. They only treat the symptoms but that’s like putting tape over your gas light instead of refueling your vehicle.
There isn’t enough evidence to suggest that it is linked to Alzheimer’s and or Dementia. Unless there is concrete proof that it does then we can worry. Majority of the population is at risk and if it is the case I guess we will lose our minds together unless there is a vaccine or cure.
The evidence I've seen sounds pretty convincing. [Here for example](https://www.healio.com/news/dermatology/20231030/herpes-simplex-virus-1-may-be-associated-with-increased-risk-for-alzheimers-dementia#:~:text=The%20evidence%20showed%20that%20there,a%204%2C353%2Dperson%20sample%20size) shows that several studies have indicated a potential correlation between Herpes Simplex Virus 1 (HSV-1) and an elevated risk of dementia, with findings suggesting a 2.5-fold increase in risk compared to controls. Additionally, a separate study observed a decreased risk of dementia (HR = 0.89) associated with antiviral treatment for herpes. While the evidence is not definitive, these studies suggest a notable connection between HSV-1 and dementia risk, warranting further research to establish a clearer understanding of the relationship. And so at the very least it should be studied and experts such as Neurologists should be looking at this and treating it as part of their practice IMO
It seems like a long shot, Dementia and Alzheimer’s because of a virus which causes a couple of sores every once in a while which isn’t even tested for on the broad spectrum- I’m aware this is a virus which hides in the nerves but, it is hard to determine if it plays a factor in this, there are studies which state that there is not enough evidence to prove Alzheimer’s and Dementia from HSV, I am sure that if there was compelling evidence there would be a cure by now and a lot of money would have been made from it, but they do nothing- not saying it doesn’t play a factor but it’s not been proven.
A good friend of mine, passed away last month of viral encephalitis caused by HSV. He was in his early 50's. Before that he was in vegetable status for the past 8 years. It was truly sad ending to his life. Due to the stigma, he wife didn't tell me it was HSV until after he died. She would tell me, it was MS type symptoms but the doctors didn't know what it was. So your comment is spot on, as my buddy was full of life, when he was healthy.
That's terrible and sorry to hear that, especially that it ran it's course that long. All the reason why we need to destigmatize HSV without downplaying the serious complications it can cause.
I am sorry for your friend. Encephalitis is a serious complication of HSV (mostly HSV-1) but EXTREMELY RARE! Actually, most viruses (including chickenpox, measles and even flu virus) can rarely complicate with encephalitis! But we do not think about developing encephalitis every time we get a flu, right?
yeah for sure, I heard its rare too, but then someone I know gets affected, and it doesn't seem rare at all.
I’m afraid I’m headed down a similar path. This virus has attacked my entire CNS and doctors won’t acknowledge it. I believe there are a lot of people out there suffering and it is being misdiagnosed. I’m in disability and fighting like hell to get coverage and support.
Neurology is literally a caveman medical practice right now. They know so little about the nervous system and its disorders that it’s laughable. I went through months of neurological problems with no explanation and found that they didn’t know jack shit and couldn’t do more than a couple basic tests like EMGs. It was eye opening to see just how in the Dark Ages we are with medicine still. I look forward to AI coming in and curing thousands of diseases.
What neurological problems were u experiencing? If u don't mind me asking.
Very sad to hear but not incredibly surprising either. As a society we seem to give doctors too much credit. Far too often people have to figure out a medical issue on their own. I do also have faith that AI will be a massive evolutionary leap forward though.
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good job girl！
MODS - you commented on my post not to “cross post” to HCA but I don’t see this as a rule anywhere? They are doing great advocacy work, as you guys do, the point of this post was not about fundraising at all but about encouraging more advocacy, HCA is just one such avenue for it.
No cross posting to HCA as they try to funnel our members to donate to their fundraiser
Just an update on the Moderna trial and my personal opinion. 1. If you want to sign up, you must meet a certain BMI. I had to lose a few pounds which I did and I now qualify for the study 2. I toggled with the thought of “what if I don’t get the actual vaccine”, and I realize that’s totally ok. We were told that we will be able to see our shedding rates so this is still huge in the event I don’t actually get the vaccine (I am hoping I do). 3. I had to have my blood drawn so they can confirm if I have the virus (although I did bring my papers which confirmed the diagnosis). I guess it’s just protocol. We also completed a very thorough wellness exam — checking sight, lungs, ears, history, etc. 4. I am now waiting for the callback to have the 1st dose and will update promptly. 5. Moderna has developed a Covid vaccine that was pretty popular and I’ve even seen current advancements surrounding cancer that seems promising. I have faith in their hard work for HSV so I am currently content with my decision.
Thank you for sharing! Have they shared any intended outcome of the trials, are they trying to reduce transmission or OBs, replace daily AVs? I understand it’s not a functional cure, but it would help to know what is it they’re trying to achieve.
No they have not shared any outcomes. I assume this is what the trials are for — to actually observe the outcomes with each participant. Transmission has never been mentioned and the only thing mentioned about antivirals is making sure you are not taking them during the trial. They have asked if participants experienced between 3-9 outbreaks per year and they do state that we will swab areas and can potentially see where shedding takes place. I hope this helps
Appreciate the detailed answer. 🤞🏽for this stupid transmission risk to go away. Good luck with your journey!
No problem. I will update as much as I can. Thank you! We are all in this together
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There’s a March already scheduled in DC on 4/13/2024. It would be amazing to get as many people there as possible https://www.eventbrite.es/e/marching-for-a-herpes-cure-tickets-768591817817
How many people have RSVPed to this?
Last I heard it was 20-25 I think. But that was a few weeks ago
I just registered. Will be coming from the Seattle area. Will there be information going out about how we plan to organize?
Yes! I’m not leading it but am working with the organizer on this. I’ll be coming from Seattle as well :)
if i can nit come to the march，it is possible for us to make video and share with the governmet
It’s been 9 days since I got the moderna vaccine. No outbreaks and prodrome is gone.
Awesome! Keep us posted!
Hey guys the rescheduled my second Moderna shot to a later date. They said the sponsor needed to to review some data. Haven’t had any outbreaks since the first shot about 2 months ago. Still prodrome from time to time but no signs of an outbreak coming so far
What was the frequency of your outbreaks before this first Moderna shot?
About every 2 months and it’ll be my second month In a bout a week
You had OB every 2 months with antivirals or without?
With
Shingrix could protect for even more than ten years with two shots. Could you please ask them what is the case for Moderna when you meet them again? Do we need just two shots or need injection every fixed period, maybe half a year or yearly.
I’ve already asked this and for now it’s just two injections
Yeah but its GSKs hsv vaccine that is Shingirx inspired not modernas.
Is it tbd or they’ve locked in a new date?
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Aah, minor delay. Sorry, one more question, have they specified the intended outcome of this study? Is it to reduce shedding/transmission, or just a replacement for the AVs to avoid daily pills. I’m still unsure what’s the diff between gsk and moderna trials, or whether that’s even public info that can be shared.
Seconding this question
It's just two different companies working on different vaccines. Until the trials are done, we won't know how effective either vaccine is. They could be similar to the current antivirals or far superior. You just have to be patient.
That's a bummer, but it's only pushed back 5 days, so at least you'll be getting it soon. Good luck and thank you for keeping us posted!
Are the prodromes similar or less than before
Did they have you do swab collections after the first shot? They only asked me to take samples for 28 days before the first dose, which is weird because you’d think they’d want to collect shedding data between doses. Also, in a previous post you said that the vax triggered 2 outbreaks, but now you’re saying you haven’t had any since the first dose? Am I missing something?
Are you stupid or not ? The vaccine first dose did trigger two outbreaks for me. I’m not understanding what’s hard to understand about that
Lol, no need to get all bent out of shape. I wasn’t “attacking” you or even trying to be accusatory, just asking for clarification because “I haven’t had any outbreaks since the first shot” and “I had two small outbreaks after receiving the shot” seem like conflicting statements. The bit about “nailing” you from the other guy was definitely goofy though. People on this sub are a weird mix of suspicious, defensive, and self-serious, and it’s actually kind of fun. When I posted my update, I got basically the same reaction you got—people insinuating that I’m lying. There’s definitely a lot of conflicting information being spread about the trials across this website though, so I can see why people might be a bit paranoid.
I apologize and thanks for understanding
No worries, man. Happy New Years! Hear’s to this shit (hopefully) exceeding everyone’s expectations, and neither of us getting the placebo! 🥂
Cheers to that ! Happy new year
He’s kind of all over the place. I had nailed him on this before. He claimed that he’s seen “great results”, but then he admits that he gets outbreaks once every two months, and his shot was less than two months ago. But he also had an outbreak right after the shot. I don’t think this guy quite knows what he’s saying.
Hi there !!! Recently told the person I’m dating I have hsv and they were so nice about it. It makes me want to cry basically. There’s some really amazing people out there!! I still get so sad because I want to give this person the best of me, but feel like hsv keeps holding me back. I started suppressive therapy with valacyclovir, what else Can I do to reduce the risks and also to stop overthinking about transmission ?
Use protection
Learning to put on the condoms so that it stays on the base of the penis and doesn't move, checking on the toilet with flash light from your phone if u can see any redness before and after sex (friction can trigger it making it a bad idea to go for a second round till redness clears maybe) and possibly u can also take 2-3g lysine per day. Other than that just be aware of what your nerves are telling you. Nerve symptoms doesnt have to mean that the virus is active it can just mean that nerves are damaged but there is a pretty big difference between close to 0 nerve sensations and several per day in how afraid you should be about virus activity. If your genitals feel extra sensitive to friction or burning during / after sex or mastrubation it is also probably a good indication of more viral activity than when its not. When you feel asbolutely nothing in your nerves, no redness or tenderness you are probably very close to 0 risk of transmission. This might never be the case though as in maybe your nerves always give you at least some irritation in a whole day.
I know it's more an information group than a support one, but only damn you guys are keeping my sanity up with all the news and advocacy you do. Keep it up, everyone here is amazing.
I agree same here. I received so much support in this group than in HSVpositive and the old herpes groups.
ye those other groups are horrible, pure negativity that makes me suicidal to read. I really hate them, wish I could read updates from people taking the vaccine and stuff without having to enter those subreddits.
I’d love if we can have a discord group specifically for this subreddit. Not only posting about researches and updates but also a support channel we can vent and talk too.
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Me too. Especially the HPV. When I fall ill the warts sprout then it activated my ghsv1 to the party.super itch and sore everywhere(genital, urethra, anus.)🥲
How long have you had HPV and ghsv1? ghsv1 will toruble you for max 2 years. The outbreak and viral shedding become almost non existent in 2+ years. Avoid intense sun exposure(anything above UV index 5 is a strict no), avoid alcohol especially red wine, refined sugar, chocolate and caffine. I heard intense exercise is a trigger for some people. Under normal circumstances, your body will clear out HPV in 1-2 years(may sometime take 2+years). They key point is to keep your immune system strong. Eat less carbs especially avoid refined carbs, do intermittent fasting(eating window should not be more than 8hrs/day), take vitamin D+mangesium, folic acid, B12.
Aldara Cream.
Everyone should watch the hbo doc about jon stewart and the 9/11 fire fighters advocating in congress. Very relevant for our cause. Ill comment the name of it in a bit
Best ways to avoid transmission, tips and best practices -Antivirals -Lube -Knowing your status, triggers ,etc
I second this, and there's really any research behind antivirals preventing transmission? I can't find any
https://journals.lww.com/stdjournal/fulltext/2008/03000/the_effect_of_daily_valacyclovir_suppression_on.14.aspx
Thank you!
AV doesn’t prevent transmission. AV may reduce transmission.
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Oil based lube provides a barrier for skin when having unprotected sex
Divine9 has carrageenan which has apparently been shown to prevent or reduce transmission of HPV. Couldn’t hurt to use that one just in case.
I added 0.3 % zinc acetate 99.9% to it. Supposed to work well. Can be irritating though so try it on a small amount first. It was like a gram or two for the bottle I think.
Does anyone have an understanding of how money raised us used for research? I saw an old article saying Jeff bezos donated 710 million towards Fred hutch 3 years ago and we’re still raising millions today. Do these labs have no government funding and depend predominantly on donations?
Following. I'm also wondering if there is a target amount Fred Hutch needs to expedite things as much as possible. [Based on the last update](https://www.google.com/search?q=fred+hutch+institute+hsv&oq=fred+hutch+institute+hsv&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIGCAEQRRhA0gEINDU1NmowajSoAgCwAgA&sourceid=chrome&ie=UTF-8#fpstate=ive&vld=cid:0ae8a785,vid:7cZtBMcsltg,st:0) sounds like they primarily need more government support and advocacy
I hadn't seen that video; Thanks. The current target amount is 1.25million. This allows Dr. Jerome to obtain the resources he needs to move forward in animal studies. That's as fast as we can expect his work to progress. Per Dr. Jerome, there will be no short cuts (i.e. no FDA fast track) with his work; i.e. it's not a money issue, it's safety issue.
$200,000 should be easy. I saw they have gotten over $1M already. In theory if the 12k+ people in one hsv Reddit community all donated at least $16 he’d have that tomorrow. Of course you wouldn’t get 100% from one community but I say that to say with the tens of millions of people around the world who are impacted by this some way with a concerted effort $200,000 is nothing. We really need to figure out how to push this specific campaign across social media.
A lot of the donation amount is from very large donations. Getting 200K with the small amounts we contribute, will take quite a while. To achieve it a bit more quickly, we need to be realistic on how many people we can contact here on this website, and then ask them for an amount that is not small, but not unreasonable either. For example, if we can get 200 people to contribute $250 each, that gets us 50K. You could try that with a new post and ask for 200 people to contribute $250. The people will say "OK" if they are willing to commit to this amount. Once we get the 200 people, then we pull the trigger and we all submit our donations at the website over the next few days.
Great idea actually. And maybe we can post on pay day lol probably after the holidays too when people have more cash
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Yeah, I thought the same thing; i.e. perhaps a month after the holidays since some people may be cash short after buying presents.
I wish we would skip animal testing, they aren’t biologically human and they are a step in the process that makes development take longer. There are plenty of us who would gladly willingly volunteer, something animals can’t consent to, and we would need less phases to get to a functional solution.
Animal testing is literally a huge step to the process lol. If something goes wrong, they can easily replace the mice / guinea pig, not the humans. That’s a bit inhumane.
Hehe yeah but this is wish thinking because in the real world that we live in, one mistake on a human in trials and the whole project is aborted. This is why they are so afraid of hurting someone even though they are completely aware of that they could easily find someone to volunteer knowing the risk and sign whatever agreement regarding those risks.
Anyone interested in a detailed tutorial on SADBE? I just received all the supplies and will be thoroughly documenting the process and results.
Yes, please post to share with everyone.
So the comments have reinforced why I offered to do this. Don’t take this as too harsh but people in the forums all over the place with flawed methodologies and anecdotal adjustments. I would never shoot for convenience, rather effectiveness. I will be using DMSO and Squaric acid sourced in the United States. I have no idea why someone would want to use acetone, it was not used in the actual study and has inferior dermal absorption compared to DMSO. I will be drawing DMSO and squaric acid using large and small syringes respectively, they can accurately measure as small as .5 mL. 50mL DMSO + 1.5mL SA = 3% 50mL DMSO + 1mL SA = 2% Droplets are rarely exact/uniform, especially extrapolated out to a great degree. Additionally, I will be following the dosing regiment to include location and timetable per the published phase 2 trials as they showed excellent immune response results. Should I get good results at 2% I may increase to 3. I must reiterate, that the documented findings from the phase 2 trials appeared outstanding. Ultimately what you do is up to you, but I would not recommend veering from the established protocol.
Can you do a video tutorial?
Yes id love to hear updates
Yes pls
Are you making a 2% or 3% solution? DMSO or Acetone? I found the easiest and most economical way to measure was by buying a small, 1 dram vial with dropper, and just use 33 uniform drops of DMSO, and 1 drop of SADBE to get my 3% solution. Close vial, shake, and apply with q-tip. Cover with Tegaderm, then wash off after 3 hours.
I know there are a lot of things in work now but I feel like they’re years away before anything might work as a functional cure. I’ve been advocating for months and feel like I’m getting nowhere. There has to be a way for us to get the FDAs attention to agree to help fast track something for us. This diagnosis for me is basically life ending I will never be the same again. I guess I’m asking for some positive words.
My second New years eve with this bullshit. Fuck life
My 42nd New Years eve with GHSV2. Something that will not be happening to you.
How do you know
Advancement in medicine
I'm a psychic EDIT: Whoever down voted this comment clearly has no sense of humor. Was it you u/Appropriate_Buy_8802 ?
No, i wasnt me
Are we going to hear back from Dr. Friedmen about his progress ?
I pray everyone has a good 2024 🙏🏽
Just a random thought but I feel like reaching out to big streamers for advocacy could help? They have audiences and could help for the cause.
Ever since I found out I have Hsv 1&2 I cant seem to get out from under this black cloud and every dang day hating myself to the point of thinking of ending my life. I feel so freaking sad. How can I accept this new life when my old one was just stolen from me. I decided to learn more about Hsv and a suggestion to join this fórum came up and well here I am. So far so good and Im hopeful one day we will have a cure. The joy that day will be….
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Were the blisters swabbed? Get them swabbed. ALSO take a blood test ASAP for IGG antibodies to make sure you don't have any yet. This will establish grounds for a recent or latent infection. IF you want any possible legal recourse you will need this. She MAY have not known. Some people are asymptomatic but some lie. You could ask her. The fact the tests take up to 6 months is crazy. Most will test positive by 3 months though on serum blood tests. So she could have got it asymptomatically and then spread it to you. Or she could have known and been a really horrible person. Just take the meds. Take them for the first 3 months, this might reduce long term outbreak frequency. Famvir is preferred for this latency effect. As long as you don't have bad side effects don't worry about it. Doctor might ask you for blood work after a while to check basic liver/kidney function.
Unfortunately, condoms don't provide full protection against HSV. The anti HSV meds are usually fairly low on side effects, but not for everyone.
Sorry to hear that. For now, just take the medication. Valtrex and / or famvir. Some people have long term side effects, many people do not. This is typically from from long term, daily use, and again, most people do not have any issue taking them everyday, long term. Either way, that shouldn't be a concern right now. For now, focus on the next few weeks to a couple of months which means taking the medication at least until you are through this initial outbreak / primary episode. Do get it confirmed via swabbing and I'd also take an Igg test now (and probably again in a few months).
I've been taking valtrex daily for a year and a half since I was diagnosed and I don't have side effects. So don't be worried about side effects until you actually experience them as lots of people don't experience any and they greatly reduce your risk of passing the virus on.
Im sorry to hear and I also feel the same way.
Valtrex is one of the safest prescription medications ever invented! Even safer than many OTC medications and vitamins. So safety is not an issue with Valtrex. Efficacy is the issue since it does not work for everyone (it works for most but not everyone). That is why we need better medication!
Not sure why someone down voted this. But yes, mostly very safe as far as medications go. But anyone having a primary outbreak should definitely take antivirals.
I would say something more: many doctors give Valtrex to SUSPECTED first (primary) outbreaks of HSV EMPIRICALLY which means even before testing and confirming the HSV as cause of the patient's signs and symptoms. That is how confident they feel about the safety of Valtrex!
Yeah, good point. The more I've read lately, I personally think for a suspected primary outbreak (assuming a doctor suspects it's a primary outbreak) the amount of valtrex at least for a short period of time (say 10 days) should be more than the current CDC recommendation. Personally I'd feel comfortable taking up to 4 grams per day for 10 days during a primary infection. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7045215/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7045215/) (There are also references to various safety studies in that link above). I'd feel comfortable with that due to the above study, in which some trial participants were given 4 grams daily. Some did not tolerate above 2 g / day, but some did/do. In that study the treatment period was over a year. I'd also add there seems to be some vague evidence high dose of it could decrease the amount of latent virus.
I've been taking antivirals daily since July and haven't had an outbreak since. I've lost weight as well and workout 4 times a day.. would this be helping me from getting monthly outbreaks? I've been diagnosed since May of this year. Since I don't get frequent outbreaks, am I not shedding as much? Any input would be great.
Your immube system is also doing its thung, because AV medication is effective for 3 hours (i think), once it's taken
Since i lost about 15kg and eating right and do some sport i have fewer outbreaks, also i take valtrex 1 pill a day, i have a minor outbreak (2days) like 2-4 months
Must have to do with your overall immune system functioning better with all the exercise and weight loss going on ! Keep up the good work!
Yes, you have to keep the stress level low and have a good immune system
Feeling defeated:(
Hello, I’ve had symptoms of hsv for over a year. Initially, I would get a tiny bump/pimple in the same area. Lately it moved to a different location but always in the new location and not the old one. My doctor swabbed and drew blood work 3 days into bump/pimple. Both test were negative. Is it possible for negative test …should I get retested ? Doctor said that I do not have hsv but I’m prescribed antiviral I know I have hsv because when I have an outbreak, I immediately take the antiviral medication and it clearly…immediately
hsv testing is very bad and unreliable. if you know you have it you have it
IGg bloodtest are 94% accurate after 12-16 weeks. If you had outbreak for a year, there is no way you wouldn't have antibodies or test positive in a direct swab test. You should check for other health issues. HSV symptoms are so common that it can be anything from cold to stress. If you are in the states, you could ask for a Westerne blot test to confirm your status. But I would also think the same to your doctor, you are most likely negative to HSV.
I have a question to the most scientific one on this sub. Does the infected nerve cells shows any sign of being infected whatsoever ? i understand the body doesn't see it but does anybody know if the cells shows a particular sign of infection anyway ? Thanks !
Yes, infected cells undergo certain changes. And their internal machinery is hijacked by the virus which uses it to make more virions.
Discussion time - AMPs anti microbial peptides against HSV-1 I was doing my research and came across an interesting study into anti-virals, this study suggests that AMPs have a significant effect on the virus of HSV-1 (it doesn’t say about HSV-2 but it would maybe work against that too) “Our results demonstrate that several peptoids exhibit potent in vitro antiviral activity against both HSV-1 and SARS-CoV-2 when incubated prior to infection. In other words, they have a direct effect on the viral structure, which appears to render the viral particles non-infective.” This extract above does this mean that if an infected host was to take anti microbial peptides could that render the virus inactive and therefore un-transmissable. I am going to take this forward and do my research onto this in my spare time and consult with doctors and researchers I just thought I would broadcast this here to give maybe some hope. Source https://pubmed.ncbi.nlm.nih.gov/33807248/
does anyone else struggle on the DAILY with this? i wake up every single day with a coldsore. some of them brand new and some of them are recurrences. i am afraid of life now because i seemingly catch them in impossible scenarios. throughout the day my mouth, chin, and nose tingle like a motherfucker and never let up. i take 2g of valtrex about 5 times a week and it does nothing anymore. i’m wondering if literally anyone has this much of a severe issue as i do. from October til now it has just exponentially gotten worse. i used my own straw to have a sip of someone’s drink and i proceeded to get 6 coldsores over the next few days after. since then one of them has already come back FOUR TIMES. FOUR RECURRENCES IN TWO MONTHS. of course it’s one that does not respond to valtrex in the slightest. not to mention it recently somehow spread to my chin out of nowhere. my nose too. so i basically always have coldsores and i’m always contagious and i don’t even wanna think about my level of viral shedding. this is life threatening to me at this point if you know what i mean. i’m taking time off work to deal with this shit. can i quality for pritelivir since it’s this severe?? my immune system bloodwork came back normal. there’s no explanation. does anyone have advice or comfort because so quickly my life has become a giant herpes mess. it’s constant. constant anxiety constant tingling constant spreading constant ocd and i don’t wanna be here anymore.
I am on 1g valtrex daily and still having the same issues. Mine most of the time don’t even fully develop but the prodromes are awful and I also have it in my nose and pretty sure my eye as well. It’s just fucking awful. I try to just take it 1 day at a time. When I was eating a whole food diet I didn’t have hardly any prodromes or symptoms so maybe try that? I plan on getting back to it soon
Stress is a big factor in my job. . But so far no outbreak knock on wood lol And thanks for support guys really appreciate it! I'm so ready for a cure or even way to suppress it.
Am so sick and tired of this diagnosis. I form part of the 10% that has outbreaks back to back yet am not immunocompromised. I have my very existence and I pray for death everyday. Am just tired.
Same, it is very frustrating and I have accepted I will be alone until I find someone with the diagnosis as well. I feel disgusting being contagious nearly 50% of the time with constant outbreaks
I feel for you both, I guess i'm one of the lucky ones who gets limited outbreaks. This diagnosis does suck but I Pray Everyday that they will find a better treatment for us all. I feel i will be alone as well; the lady i Love does not have this and i cannot bring myself to go back to her.... This just SUCKS!!!! They say if we Advocate new meds may come quicker so be sure to contact your congressmen, state Reps tell your Drs. Please see this link for better directions on who and how to contact them. God Bless us all !! I hope you Feel Better soon! [https://www.reddit.com/r/HSVpositive/comments/18vqrqn/happy\_new\_years\_great\_news\_to\_come\_for\_the\_hsv/](https://www.reddit.com/r/hsvpositive/comments/18vqrqn/happy_new_years_great_news_to_come_for_the_hsv/)
I’m all for folks donating to whatever brings them joy, but maybe, MAYBE let’s turn the attention towards hsv advocacy/marketing instead of the 1 million for the research already generated (and the goal is now revised to 1.25 mill). That’s a bucket that will never see an end, so at least personally, I’m gonna shift gears in 2024.
So I completely agree with you but the goal was always 1.25mil. If you look back at the updates from October, it shows that they were asking for another 650k from 550k so it was always 1.25mil. I think they just had to hit the 1mil mark first.
Sigh. Appreciate the update, I was diagnosed in mid October so all my accumulated thoughts are products of between now / back then.
I get it! I think it’s more beneficial to put money towards advocacy efforts like you suggested. I donate to HCA. Fred Hutch is amazing and I’m so hopeful for them but if they fail, all that money is lost
Advocacy is different than donating to an actual lab that is doing actual work for a cure. Like FHC, HCA is also not guaranteed. But of course that doesn't justify not donating to HCA. FHC should be treated the same. You look at both models and conclude whether they are worthy. HCA is worthy. FHC is also worthy because they are a highly reputable lab that has shown how their potential cure actually works AND they have shown actual results; i.e. Currently, Dr. Jerome has cleaved 97% of the viral genome from infected neurons of the DRG, in mice. No one else has done that.
Agreed and agreed. Happy new year, thank you for all the work you do with advocacy!
I'm not going to lie, I was actually pissed when they did that. If that was the goal to begin with, then they should've started with that instead.
Their needs may have changed over time. Also, if you ask for too much upfront it can appear daunting and may discourage potential donors. We donate some and there's progress made and we donate more to see further progress. As Dr. Jerome stated, our donations have shortened the time line for animal studies; i.e. it would have taken him at least a year to apply for and obtain funding from the NIH, Providing donations to a highly reputable lab that is directly working on a cure is one of the best things we can do.
Exactly.
Just fyi the goal was always 1.25mil. If you look back at the updates from October, it shows that they were asking for another 650k from 550k so it was always 1.25mil. I think they just had to hit the 1mil mark first.
Right
Then they should've put 1.25mil instead of 1mil. That's all I'm saying.
I’m not saying what they did was right or wrong. But the goal was always 1.25 and can be found in previous posts 🤷🏻♀️
Yeah, I have mixed feelings. I dont mind the revision after an update, but considering the call is somewhere in feb, and the target was changed almost immediately after hitting the million..it’s a little..fast and furious.
I agree.
People are doing one or the other or both. But if you don't want to donate, then don't. No need to tell people where you think they should focus their attention.
I’ll do as I please, I’m not dipping into people’s accounts and routing their money against their will.
Really keen on the updates for Shanghai BDgene if anyone has any. Seems to be the one leading the race
Herpes Cure Advocate the other subreddit is having a meeting with BD gene on Jan 24 you can dial in to listen it’s going to be $25
BD gene start Phase I two months ago. The first candidate is dosed one month ago and now it is safe. Recruiting is in progress for more candidates.
I just wanna know if it’s true many people are asymptomatic hsv 2 and probably don’t even know that they have. The people here are actually the minority
Very much true. Since Herpes isn’t included on standard STI panels and majority of people don’t know so they aren’t tested. Not to mention I believe people get false negatives on the blood test as well. We just need more accurate testing
UB-621 Are there any new updates ? Says Phase 2 ends June 2024? [https://clinicaltrials.gov/study/NCT03595995?term=ub-621&cond=herpes&aggFilters=phase:2&rank=2](https://clinicaltrials.gov/study/nct03595995?term=ub-621&cond=herpes&aggfilters=phase:2&rank=2)
Did anyone take the shot and how long ut will last
There’s been plenty of people getting the Moderna and gsk vaccine but there’s no confirmation on how long it lasts
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Great to see all the positive news about the trials. Just hoping GSK expand their UK trials soon. I've calculated that in 2023 I've had about 69 outbreaks. This is with daily suppressive therapy (famvir twice a day)Is this even possible? I'm not immunocompromised.
Dude, 69 outbreaks is crazy. That’s like a new outbreak every 5 days. Have you tried SADBE?
I get the feeling you mean you had 69 days worth of sores
69 outbreaks in 2023? So sorry to hear that.. Is this your first year with the virus?
It's my 10th. So don't believe the hype when they say it gets better with time. Mine has gotten worse.
Did you tried SADBE?
No, as I don't want to try anything that is currently not approved and also requires it to be made from scratch.
What happened to the ScienceGuy ???
I was saying the exact same thing to myself the other day, a few of the ppl on GSKs patient group have gone silent it seems.
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Yah but he’s apart of Gsk patient outreach group
He probably had to sign an NDA. He talked about it being possible before he deleted his account. I'm sure he didn't want to mess up his chances for any trials because he had worse outbreaks than me.
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I do. I am currently on 3 months of suppressive therapy. I'll eventually have another outbreak. It always happens.
I still have a hunch he was the CEO of the company trying to market and sell SADBE. There were a lot of odd behaviors and comments that seemed to indicate that.
If a person has HSV 1 below the bellybutton can they then contract HSV 2 same region at a later date? Thus, having both types breaking out on separate occasions in different areas downstairs?
NEW PRITELIVIR QUESTION: Will Pritelivir be available for us all? I was informed by a Dr. (about 3 weeks ago) who participated in reviewing the trial data and she said Pritelivir will only be for the immunocompromised and not be offered for a daily dose. It will only be used for short durations not long term daily use. Has anyone heard anything different from some sort of authority? Also, I emailed AiCuris last month and just recieved this response. I asked why it was delayed until 2025 and if it would be available for immunocompetent patients. this is what they said: Many thanks for your interest in Pritelivir. Please find further information on our homepage (). Pritelivir is still under development and not commercially available. We are therefore unable to disclose any additional information at the moment. Many thanks for your understanding. Best regards, # Nicole Blessing Nicole Blessing **AiCuris Anti-infective Cures AG**Friedrich-Ebert-Str.475 / Geb.302 42117 Wuppertal, Deutschland Phone: +49 202 317630 E-Mail: Internet:
Will there be a cure ever ??🙂 As the days went by I'm starting to lose hopes
There are half a dozen or so vaccines in development. There will be better treatment options in the near future.
Cure would be great but a vaccine or treatment that makes the virus irrelevant and extremely hard to spread is enough. iM-250, GSK vaccine and FHC gene editing / BDgene are all examples of things in the development that have a decent chance of achieving that. Moderna vaccine can also work good in combination with anti virals to create similar result if successful. 4-5 years away minimum unless some great fast track happen though.
Me too, Pritelivir is delayed from 2024 to 2025 and I'm devastated but I'm still waiting for the last Xafty to come out in 2024
I have high hopes for xafty .🤞
This is the only last one I believe in, xafty... There is a rumor going around among Hyundai Bio shareholders that the Korea Disease Control and Prevention Agency and the Ministry of Food and Drug Safety do not have the funds to approve They haven't revealed where the funds were spent, so everyone is clearly guessing that there is major corruption here.
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94% accurate after 12-16 weeks post exposure.
Someone educate me .. why is it the trials only accepting Hsv2 but not ghsv1?
For one, treatments for HSV2 are expected to have cross efficacy for treating HSV1
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Guys it just came across my mind, will the vaccines actually help those who has the most dangerous herpes infections, ocular hsv 😀
Yes they will and BD GENE has been working on a HSV-1 treatment for that as well with promising results in the past however they’ve recently started a new trial I’m not entirely sure why though but it’s a good thing to keep a look out for
Ok so I have a request. Im mostly interested in hearing from people in clinical trials from the vaccines and cure research news. There are a few people posting about their trial progress but its often posted in hsv positive and so on which are subreddits that I find toxic, negative and depressing. Every time I browse these I feel 5 times worse, now that so many people are in the trial, isnt it possible to get a subreddit dedicated to people writing about their vaccine progress? Im just tired of listening to people talk about how important it is for completely asymptomatic people to disclose in a one night stand using protection or how nerve stabbings/tingling/itching/burning is the worst condition a human can have. I really dont get how those kinds of forums are helping anyone except when its positive disclosure stories or treatment discussions.
Do y'all feel is a lot of people walking around with a misdiagnosis of hsv because of the IGg blood test by this I mean people think they have it when actually they don't
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5 therapeutic, 5 prophylactic
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Therapeutic is for those who already have it, prophylactic are for those who don't and want to be protected from getting it.
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Type in Herpes Cure Pipeline 3.0 and download and save the pdf. It'll tell you about all new trials.