If you’ve followed this ASP2151 thread, you may know that I’ve been taking amenamevir (Amenalief) for about two months. In these two months, I have had absolutely no symptoms and no side effects to speak of. I’m ordering blood work soon to confirm that there are no major changes in important biomarkers (kidney, liver, heart, etc.) but I haven’t experienced any side effects that I could observe myself (headaches, diarrhea, insomnia, mood changes etc.) However, there is no data about the effectiveness of valacyclovir + amenamevir on reducing HSV recurrences. Two months of being on this combination is not enough to tell how well it works.
As a community, what we need is a functional cure. There’s a lot of excitement surrounding pritelivir in this regard. Pritelivir, like amenamevir, is a new drug inhibits the HSV helicase-primase complex. This is a different target than valacyclovir, which is why combining the two has major potential to be a functional cure. If you’ve read Josh Bloom’s article on the possibility of using pritelivir and valacyclovir together as a sort of HIV-like cocktail, then you’ve probably realized this combo is the only way in the foreseeable future that we will have a functional cure.
Here’s the reality of the situation.
There will not be a vaccine in the foreseeable future (barring a miracle that allows GEN-003 to continue. I wouldn’t count on that).
There will not be a CRISPR treatment in the foreseeable future.
The only HSV drug that is going through clinical trials (past pre-clinical) is pritelivir. That means that aside from amenamevir and pritelivir, there will not be any new drugs on the market for at least ten years.
You are not getting much help from the pharmaceutical companies. It’s the truth. Many people here are already aware of this. Look at the HSV pipeline. Other than the helicase-primase inhibitors, there is little to no progress being made, and the failure rate is incredibly high.
If you want, you can wait ten years hoping that the pharmaceutical companies come out with something. The only alternative is to conduct our own trials and gather some data.
There are plenty of drugs/supplements with studies that have some evidence to support their use in preventing HSV recurrences, but there’s not much consensus on whether they actually improve anything. A lot of them have been tested in animals, but not in humans for the purpose of reducing HSV recurrences. Others have been tested in early-stage trials with very small sample sizes and don’t achieve statistical significance, even if the results are promising:
Aspirin & other COX-2 inhibitors Another link
and plenty more.
Some people have also speculated that diet changes (ketogenic diet, intermittent fasting, etc.) also lead to dramatic improvement in symptoms. There is plenty of reason to be skeptical about these claims, especially when they only come from a small number of people. The sample size simply isn’t large enough.
And, of course, there’s a new drug that we know to be a strong inhibitor of HSV replication: amenamevir. Just as famciclovir has the same effect on HSV as valacyclovir, amenamevir has the same effect on HSV as pritelivir. And, as some of you know, amenamevir is approved in Japan and can be purchased online.
In many cases, valacyclovir by itself is not enough to stop all symptoms/recurrences. Additionally, valacyclovir doesn’t reduce shedding as much as it should. But research has found a strong correlation between number of recurrences and shedding. If we get recurrences down to zero, chances are that shedding is close to zero. At the very least, it means with very high probability that shedding has been significantly reduced.
Clearly, to achieve a functional cure, valacyclovir is not enough. But when combined it with other drugs/supplements/diets, it could achieve a functional cure or at least eliminate all outbreaks (which all but guarantees a very low level of shedding). Hypothetically, valacyclovir might reduce the average number of outbreaks per year from 3 to 1. Taking amenamevir in combination with valacyclovir might reduce that number to .5. Taking glutamine with amenamevir and valacyclovir might reduce that number to .2 (this is just a hypothetical example). Many of these combos may have a synergistic effect, meaning that using both drugs together would have a stronger effect than the effects of each individual drug combined. And how will we actually figure this out? By doing our own clinical trial.
We need a significant amount of participants. A trial will have at least sixty participants (more is better, but sixty is doable) for a three month period. I’ve created to gather some basic information about people (nothing personal or potentially identifying. Just things like age, time of diagnosis, frequency of outbreaks in the past year, whether or not they currently take medication. This data will help group the study participants properly) and a spreadsheet for a trial participant to record when they get an outbreak and to briefly describe the symptoms. The group will be split in half, with thirty participants taking only valacyclovir and the other half taking valacyclovir along with whatever we want to study in combination with valacyclovir. Other standard study procedures such as randomization of the groups will be incorporated into the trial. All the participants have to do is take the pills and record any outbreaks they have, briefly describe the symptoms, and write down when they are fully healed from the outbreak.
At the end of the trial, we will have three months of data for sixty participants. That’s ninety months, or seven and a half years of data, in each group. If the valacyclovir group had a total of ten outbreaks, then the average number of recurrences per year would be about 1.3. If the combo group had a total of five outbreaks, then the average number of recurrences would be about .7. Finally, we test to see if the combo led to a statistically significant reduction in outbreaks compared to the valacyclovir only group. The larger the study group, the more statistically significant the findings will be, which is why a large number of participants is crucial.
Finally, we finalize the trial by performing any other important data analysis. For example, we could see if there is any correlation between age and efficacy of the treatment. We generate graphs and charts and write a brief “paper” presenting the findings.
The only one of these trials that would actually “cost” a lot of money would be an amenamevir trial (amenamevir, although available, is pretty expensive). However, if enough people are willing to participate in one, we could get data on what looks to be the most effective treatment that is currently available.
A trial to assess the effect of any other drug, supplement, or diet would practically cost nothing. Aspirin, glutamine, lactoferrin, and propranolol are widely available and inexpensive, as are many of the other possible treatments, and these trials assume that participants are already taking valacyclovir whether it is covered by their insurance or not. And these trials do not require a major time commitment. The participant will have to verify at the beginning of the trial that they have the study drugs/supplements in their possession (just send a picture and blur out any personal info if there’s a prescription bottle). They take one or two pills a day and record any recurrences. In trials with potential side effects (e.g. lithium), the participant records any side effects. At the end of the study, the participant sends the spreadsheet over. That’s it.
These studies and data may not be as high quality as that of many clinical trials, but they are certainly useful. By obtaining this data, we give ourselves the ability to treat this disease better than ever before. Instead of shooting fish in a barrel and hoping some supplement works because one person on the internet said it did or because a supplement had an effect in an animal study, you’ll be able to rely on real data from humans. Not only that, but that data will be on a combination of valacyclovir and whatever else is being taken, which there are very few if any human studies on.
TL;DR: Doing crowdsourced trials on different combinations of valacyclovir and other compounds, we can see which compounds are effective for improving HSV. You can participate, and it is minimally time-consuming and costs next to nothing (unless you want to do an amenamevir trial). Participating will help us gather data to improve our conditions dramatically.
If you’re interested in participating, please fill out this form: https://goo.gl/forms/Q50PKY8I11tVMsLh2
I am not interested in anyone’s personal data. These studies are to remain anonymous and I will never ask for or attempt to collect any personal data. The only reason I ask for age in the form is because is a potential variable to account for in data analysis. You do not need to provide your age if you don't want to.
All communications should be done through this website’s messaging system or using an email that does not link to your identity. You can reach me at honeycombstudy at gmail.com or message me on this site.
Any questions and/or skepticism are more than welcome.
Finally, if anyone would like to contribute to this project please contact me! Let’s start taking action.
So what sites are you guys considering? I've been on PS for a few months with no luck. I've also been on OKCupid and Bumble but I find myself stalling to actually meet up for fear of " the talk". What are your experiences?
Since I am having such a hard time dealing with my GHSV diagnosis, I thought it would be beneficial to express my emotions via a poem. I welcome all feedback, and thank you for reading:
"Death To My Giver "
My giver was a male, and his penis looked clean
I looked and searched around, but no bumps were seen
We had sex on the couch, and sex in his room
He had an open invitation, as a guest in my womb
My vagina let him in, with a hug and a squeeze
His penis returned the favor, with an incurable disease
Six days later, feeling symptoms in my bed
Taking selfies of my vagina, of bumps that turned red
My worst nightmare in the world, unfolding before my eyes
With no one to talk to, to comfort my cries
Having to go to work, with blisters and in pain
Losing sleep and my mind, isolated and insane
Doctors visits, drugs, and crying for days
Drinking myself to sleep, in an ambien haze
Reading stats and blogs, to make it all seem okay
Feeling worse about my life, with each passing day
A fever, a headache, swollen glands, and the chills
Looking back on meeting you, I should have run for the hills
You infected me, and left me, to deal with it alone
You showed no remorse, no answer from your phone
Now my choice is gone, and the freedom to have sex
Replaced with insecurity, fear, and hiding bottles of Valtrex
The stigma and the pain for the rest of my life
Will I become a mother, a girlfriend, or become somebody's wife?
Will I be accepted, loved, and made whole again?
Or will I be rejected, sad, a lonely old hen?
Hearing jokes about herpes, now it hurts all the more
Having to tell myself I'm not dirty, repeat, I am not a whore
I was tested before, for HSV and all
It always came back negative, never once received a call
I want to sue you and scream, the most repulsive guy
It gives me pleasure to think about every way you may die
Every ounce of anger I have, directed at you
So DEATH TO MY GIVER, you probably knew
Current situation I am in. (It is so long, but I feel like all the details need to be explained, THANK YOU all so much for your time in advance.) (I don’t know what else to do.)
Dec 2015 – noticed a mark on the left side of my penile shaft that I thought at the time looked like rug burn. Had protected sex, brief unprotected oral two weeks’ prior with female.
Fast forward another 5 ½ months, this would have been Early June of 2016. I noticed this time that TWO marks showed up on the left side of my penile shaft. One being in the same spot as the first mark in December of 2015 and a second mark that sat a little above it on the base left side of my penile head. I did not know much about herpes at this time, so when I got back to my home state I went to the doctor to have him look at it. These growths/spots (for lack of a better word) were almost healed at this time, and we decided to get the whole set of STD Blood Tests. The herpes tests were type specific, CLIA, IGG’s. I tested NEGATIVE for everything. So I just put it all behind me.
Fast forward to literally one year later, around the middle of May of 2017. I noticed a very little sore/mark/ break in the skin/ (hard to explain) that sat at basically the same spot on the base of my penile head that one of the spots from June of 2016 sat. This is when I really starting to think how strange that was that those spots sat so similar. I did have heavy condom usage around all three of these incidents, so I thought it could be a contact dermatitis or eczema type issue, but I wanted to get another set of blood tests done to make sure. So I retested through the same doctor with LabCorp again. Full set of STD blood tests, Herpes tests were CLIA, type specific IGG’s. I tested NEGATIVE again for everything. 18 plus months since December of 2015. I tried to put this all behind me again but I found myself still trying to figure out what this could possibly be.
So that is when I got in touch with Terri Warren and got the Western Blot done as well for greater clarity. My results all came back negative. I was so excited.
Then low and behold, AGAIN in late May of 2018, (so weird that these symptoms keep coming back once a year during the same few months of each year, MAY/JUNE,) I experienced some itching and redness in the same area on the left side of the penile shaft. This time I experienced red linage and markings that looked like an oval surrounding a prior spot that had previous sores/breaks in the skin years ago. So I had an infectious disease specialist in the area on call to help with a PCR Swab right away. Had the red areas swabbed very aggressively. Got good amount of skin off and results AGAIN came back negative. Did another IGG for amusement and again all negative. I do want to make this side note —NONE of my sores/breaks/marks have ever been blisters with fluid. I just thought it’s important to mention.
With all that said, I have had 5 totals test done which include 3 IGGS/full STD panel, 1 Western Blot and 1 PCR and all have come back negative. I have worked with Terri Warren, an Infectious Disease Specialist here in my city, and a dermatologist, and they all keep telling me that I’m negative and to move on. I have gotten answers ranging from possible dermatitis to Fixed Drug Eruption as well possible penile psoriasis. I’m in limbo land. I believe my test results but also feel like my symptoms has some similarity to GHSV1. It is just so frustrating to not get a definitive answer on these symptoms. Maybe I’m too focused on HSV but i just don’t know a lot about other causes to explore. I know they are out there though. Skin is skin after all.
Anyways, I just thought I’d share my story in hopes of some additional insight from others experiences to see what else this could be and to get greater clarity! I have a great team of specialists that I’m working with and wanted to add some additional help and knowledge from this great support team as well! :) Thanks again! All the best to you all!
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