Jump to content
World's Largest Herpes Support Group
Sign in to follow this  
Bigtime

Amenamevir + valtrex group funded study?

Recommended Posts

Bigtime

With amenamevir being able to be purchased online, i was wondering if people would be interested in group funding someone to do a self test with PCR swabs. Ive seen people mention before that they were going to do these tests but they are expensive.  If everyone crowd funded for these tests, an individual could do testing for a period of time with no medication, then with valtrex, then with amenamevir and finally with amenamevir stacked with valtrex. Everyone then could have  a better idea of the efficacy when stacking this medications and extrapolate to themselves. I would be happy to do these tests as i have already ordered amenamvir.  However i am newly diagnosed and therefore it may be better to have someone who has had hsv for longer and their shedding rates have stabilized. 

I would be happy to donate to this cause and was curious if others would be too.

 

 

Share this post


Link to post
Share on other sites
vzhe

I have not been able to find a way to do PCR swabs even if money is not an issue. If there's a reasonable way to do this, please let's start there. I'd pay for sure.

I think there's enough of a market that someone could even start a shedding-testing-as-a-service company.

this is especially relevant because something like 70% of asymptomatic cases are expected to not shed at all. It could be lifechanging for those without symptoms if someone offerred shedding testing.

Share this post


Link to post
Share on other sites
RNY18

Even with medications like Amenamevir even though lessened, there is still a chance of viral shedding,

though lessened , correct ?

So frustrating....

 

Share this post


Link to post
Share on other sites
Jimmyjimmyhuapua

But when they will be coctail maybe there wont be viral shedding too. With amenamevir herpes cant infect new cells and with valtrex it will be supressing herpes. I think it would be really a good idea to study on this. All comments are positive people say that they feel like normal again. Most of people who try amenamevir are having obs frequently and they say results are amazing. Not for asymptomatic people but to test for those who are suffering would be better.

In hiv cases as you know coctails are working so well why not for hsv ?

Share this post


Link to post
Share on other sites
dont quit!17

I've thought about this before as well. I think if we are organized we could do it. It would definitely be worth it. I would be happy to pitch in money for someone to do shedding test. Even if its not me, it would be nice to see where most people stand in regards to shedding activity. Learning to telegraph when one asymptomatically sheds could be life changing. We have several intelligent forum members here on this website. It is possible and we might as well start now instead of waiting. 

Maybe @vzhe or @NorCal_Herpster could be our first guinea pigs since you guys are already using Amenamevir and Valtrex

Share this post


Link to post
Share on other sites
NorCal_Herpster
2 hours ago, dont quit!17 said:

I've thought about this before as well. I think if we are organized we could do it. It would definitely be worth it. I would be happy to pitch in money for someone to do shedding test. Even if its not me, it would be nice to see where most people stand in regards to shedding activity. Learning to telegraph when one asymptomatically sheds could be life changing. We have several intelligent forum members here on this website. It is possible and we might as well start now instead of waiting. 

Maybe @vzhe or @NorCal_Herpster could be our first guinea pigs since you guys are already using Amenamevir and Valtrex

Even before taking Amenamevir, I wondered how much I actually shedded.  And if I only shedded certain days of the month.  So if someone knows a way I can have daily swabs tested, I might be interested.  If it’s expensive, I might be out since I’m already spending almost $7k a year for Amenamevir. 

Share this post


Link to post
Share on other sites
Bigtime

Well the whole idea would be for the group to fund your expenses for the testing in exchange for you testing and sharing your results. 

Share this post


Link to post
Share on other sites
dont quit!17

https://www.medichecks.com/tests/viral-pcr-swab

So as an example and to get an idea of how much these studies are.

A 3 day HSV PCR swab collection in the UK would be 199 pounds which I think is equal to $250.00 USD.  In this lab, results would be able to be obtained via computer. 

So in the UK a 30 day VIRAL PCR swab tests would be approximately $2,500.00 USD

This is something to think about. I will continue looking up labs in the US. 

Share this post


Link to post
Share on other sites
Bigtime

So in theory, if we were able to raise 10,000$ we could finance someone to do 4 months of testing, 1 no medications, 1 with valtrex, 1 with amenamevir and 1 with amenamevir + valtrex.

With washout periods in between.

Not undoable

Share this post


Link to post
Share on other sites
dont quit!17
1 hour ago, Bigtime said:

So in theory, if we were able to raise 10,000$ we could finance someone to do 4 months of testing, 1 no medications, 1 with valtrex, 1 with amenamevir and 1 with amenamevir + valtrex.

With washout periods in between.

Not undoable

The only thing is that in clinical trials, I think they perform multiple swabs daily (because we can shed at any given time). I think these swabs are once daily. So performing them twice daily would be around $5,000.00, thrice daily for a month $7,500.00. I would say the most important one to test for would be: amenamevir + valtrex, second the placebo, third the amenamevir, fourth is valtrex

 

Share this post


Link to post
Share on other sites
vzhe
7 hours ago, dont quit!17 said:

The only thing is that in clinical trials, I think they perform multiple swabs daily (because we can shed at any given time). I think these swabs are once daily. So performing them twice daily would be around $5,000.00, thrice daily for a month $7,500.00. I would say the most important one to test for would be: amenamevir + valtrex, second the placebo, third the amenamevir, fourth is valtrex

 

I think this should be doable a lot cheaper. We just need someone to start a lab for it.

Share this post


Link to post
Share on other sites
vzhe

I'd be able to figure this out if I cared enough. This could be a profitable business. But I'm already retired and have no interest in running another business. If someone else did it, they'd have customers for sure.

Share this post


Link to post
Share on other sites
vanish123

I have recently started taking Amenamevir.  I have burning mouth syndrome which is probably caused by HSV1 (I am self diagnosing myself as antivirals are the only things that stop my lips from burning and feeling like they are going to cause an outbreak), my tithers were pretty high for HSV1.  My doctors, I have been to 3 think I am some rare unicorn, so I do my own research online.  I have taken every antiviral drug known to man, famicyclovir, acyclovir, valtrex etc.  I recently purchased Amenamevielr and broke the Amenamevir in half and started taking it with 1 g Valtrex.  I think my symptoms are subsiding.  I used to have to pop famicyclovir and acyclovir like candy and now I can go for longer periods of time without any side effects.  Literally was taking something every 4 hours to the point that I had to switch up drugs, because the prescriptions would run out.  Now taking something twice a day.  Not sure if it is the amenamevir or the valtrex, but perhaps it is the Amenamevir that is making my symptoms less severe as I ran out of Valtrex 2 weeks ago. 

 

I have also tried the varicella vaccine as well, but probably did not follow it like the French study.  Like I didn't stop taking antivirals prior to getting the varicella vaccine.  Anyway, hope this helps someone.  Prior to having the varicella vaccine, I could feel the burning in the back of my head/brain it was pretty scary to the point I was sure I was getting encephalitis or something maybe it's called meningitis.  Herpes something or other of the brain.  Then after the varicella vaccine, I rarely would have that happen. 

Now after the Amenamevir, I feel kind of normal.  I ran out of Valtrex 2 weeks ago and am taking the 1/2 dosage Amenamevir at the office when I remember, I am not even taking it very regularly and I am taking it with my acyclovir 200 mg capsules.  I take the acyclovir 200 mg more often then I take the halfs of Amenamevir.  I hope pritlevir comes out soon and provides us all much relief.  There is hope, just wanted to share.

Share this post


Link to post
Share on other sites
Miss Horne
16 minutes ago, vanish123 said:

I have recently started taking Amenamevir.  I have burning mouth syndrome which is probably caused by HSV1 (I am self diagnosing myself as antivirals are the only things that stop my lips from burning and feeling like they are going to cause an outbreak), my tithers were pretty high for HSV1.  My doctors, I have been to 3 think I am some rare unicorn, so I do my own research online.  I have taken every antiviral drug known to man, famicyclovir, acyclovir, valtrex etc.  I recently purchased Amenamevielr and broke the Amenamevir in half and started taking it with 1 g Valtrex.  I think my symptoms are subsiding.  I used to have to pop famicyclovir and acyclovir like candy and now I can go for longer periods of time without any side effects.  Literally was taking something every 4 hours to the point that I had to switch up drugs, because the prescriptions would run out.  Now taking something twice a day.  Not sure if it is the amenamevir or the valtrex, but perhaps it is the Amenamevir that is making my symptoms less severe as I ran out of Valtrex 2 weeks ago. 

 

I have also tried the varicella vaccine as well, but probably did not follow it like the French study.  Like I didn't stop taking antivirals prior to getting the varicella vaccine.  Anyway, hope this helps someone.  Prior to having the varicella vaccine, I could feel the burning in the back of my head/brain it was pretty scary to the point I was sure I was getting encephalitis or something maybe it's called meningitis.  Herpes something or other of the brain.  Then after the varicella vaccine, I rarely would have that happen. 

Now after the Amenamevir, I feel kind of normal.  I ran out of Valtrex 2 weeks ago and am taking the 1/2 dosage Amenamevir at the office when I remember, I am not even taking it very regularly and I am taking it with my acyclovir 200 mg capsules.  I take the acyclovir 200 mg more often then I take the halfs of Amenamevir.  I hope pritlevir comes out soon and provides us all much relief.  There is hope, just wanted to share.

Hahahahah! My Doctor also thinks that I’m a rare unicorn and can’t understand why I don’t get on with antivirals!

Like you, if I wasn’t taking them I think I would have suffered encephalitis by now!

I also hope Pritlevir comes out soon, they’ve been studying the drug since 2002 and we haven’t had any new treatments for years.

It’s ridiculous that this virus runs such havoc in our bodies and we haven’t got suitable treatment. 

Share this post


Link to post
Share on other sites
Toro

Vanish123,

I was popping Valtrex 500 mg every 4 hours just like you since I was facing more or less your symptoms.I feel as if I am born again since the day I started taking 200 mg Amenalief a day for the past 2 months all ready.I am only taking Amenalief a day and quitted Valtrex since Amenalief is sufficient.I can sleep normal since my trigeminal is less affected.I no longer have obs around my eye lids and no longer burn in my rectum area.Until scientists come up with a better solution I will have to keep on taking Amenalief 200 mg a day.A couple of days ago I took the chicken pox shot Varivax but didint help so I had to restart  taking Amenalief.

Share this post


Link to post
Share on other sites
Miss Horne
1 hour ago, Toro said:

burn in my rectum area.

I’ve always wanted a smoking hot ass, now I’ve got one thanks to hsv :joy:

Share this post


Link to post
Share on other sites
vzhe

Amenamevir has a plasma half-life of 8-9 hours (as opposed to 2-3 hours for acyclovir), which means you're actively suppressing the virus for a much longer part of the day. Add to that the non-linear synergy of different mechanisms, and for many this combination could mean full symptom relief.

We don't know yet, but it's not impossible. Can't wait for Amanalief to get approval for HSV and come to the US. It's all up to the FDA really.

https://accp1.onlinelibrary.wiley.com/doi/full/10.1002/cpdd.630

Share this post


Link to post
Share on other sites
Miss Horne
On 2/21/2019 at 4:48 AM, vzhe said:

Amenamevir has a plasma half-life of 8-9 hours (as opposed to 2-3 hours for acyclovir), which means you're actively suppressing the virus for a much longer part of the day. Add to that the non-linear synergy of different mechanisms, and for many this combination could mean full symptom relief.

We don't know yet, but it's not impossible. Can't wait for Amanalief to get approval for HSV and come to the US. It's all up to the FDA really.

https://accp1.onlinelibrary.wiley.com/doi/full/10.1002/cpdd.630

Sorry I don’t understand this, are they trying to get Amenalief approved for use on shingles outside Japan? 

Share this post


Link to post
Share on other sites
Herpeguy562
On 1/11/2019 at 1:30 PM, Bigtime said:

With amenamevir being able to be purchased online, i was wondering if people would be interested in group funding someone to do a self test with PCR swabs. Ive seen people mention before that they were going to do these tests but they are expensive.  If everyone crowd funded for these tests, an individual could do testing for a period of time with no medication, then with valtrex, then with amenamevir and finally with amenamevir stacked with valtrex. Everyone then could have  a better idea of the efficacy when stacking this medications and extrapolate to themselves. I would be happy to do these tests as i have already ordered amenamvir.  However i am newly diagnosed and therefore it may be better to have someone who has had hsv for longer and their shedding rates have stabilized. 

I would be happy to donate to this cause and was curious if others would be too.

 

 

Try selfcollect.com

Share this post


Link to post
Share on other sites
HSV-SUCKS-DONKEYBALLS
Posted (edited)

I just got my order of Amenalief from japan. Took 2 half.pills so far and dont feel much different.

With it still been taking usual 1 500mg valciclovir also.

have had a constant headache for last 6 years since getting hsv2 orally.  Dont have outbreaks jusy constant burn / headace feeling ..

had high hopes but hasnt really helped me...

Hurry up pritliver!

Edited by HSV-SUCKS-DONKEYBALLS

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this  

  • The Hive is Thriving!

    • Total Topics
      69,746
    • Total Posts
      470,346
  • Posts

    • Sarah889
      Really wasn't sure which topic to put this in! I'm guessing a lot of you will have seen the recent news that Mel B was rushed to hospital thinking she was blind from her eye herpes.  I know she's not as famous as she used to be, but I really don't understand why celebrities with a big presence aren't doing anything about this, such as fundraising for a cure or even just talking about it to raise awareness. Correct me if I'm wrong but I don't think she's ever spoken about it before!  She clearly suffers from some bad symptoms. Thinking that you've gone blind must have been one of the most terrifying experiences, and to me, after that ordeal I would try and do everything in my power to raise awareness and find a cure.  Maybe she just doesn't know about all the vaccination research that's currently happening, and how many of these places need the extra funding to keep going?  Not sure where I'm going with this 😂 But does anyone think it's worth getting in contact with her about raising some awareness?
    • WilsoInAus
      Hey @Alda whatever is going on for your arm you can rest assured it is not at all likely to be herpes. Could the blister type things be from the massage causing irritation, perhaps even contact dermatitis? If you aren't seeing improvement soon consider seeing the doctor but it doesn't strike me as anything of much concern.
    • Alda
      I need help; i went and got a massage and 2 days later my upper arm feels super sore and is red with 3 blister type things, each about a small pea size the place I got a massage at was  not very sanitary , it was hot in there and the masseuse was sweating I think (i do have the down south H but haven’t had a breakout in about a year and I still don’t.) my arm does not itch just super sore. I wonder what is on my arm. any ideas?
    • Quest
      It did! There are combinations you can take that will not give you this effect, I just didn't want to do medication anymore. What I am doing https://www.amazon.com/MakingCosmetics-BHT-4-4oz-125g/dp/B01DE780OS read Steve Fowkes free book BHT1/8 t in coconut liquid MCT chain oil. Extremely hard to dissolve. I leave it for a day, must read Steve Fowkes free book online, overdose gets people dizzy! More is not better! Oils will also not get Rancid if you put some in your cooking oils! whole food vitamin, glutamine 3x one gram, suggested by case9 love it DHEA,25mg, most people who breakout have low levels lugols iodine worked way to four drops. Fulvic acid minerals. Thyriod granular meds   When I used to have obs I used monolaurin and st.John s wort. I used diaper rash cream for obs I also still spray genitals with zinc sulfate mixed with water. I learned it kills any virus plus summer sweat won't smell at all!  There is one thing I will not be without and that's BHT and zinc sulfate
    • blurneworder
      Did your hair grow back?
×
×
  • Create New...

Important Information

We have placed cookies on your device to help make this website better. You can adjust your cookie settings, otherwise we'll assume you're okay to continue.