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Bigtime

Amenamevir + valtrex group funded study?

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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.

 

 

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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.

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RNY18

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

though lessened , correct ?

So frustrating....

 

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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 ?

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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

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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. 

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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. 

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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. 

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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

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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

 

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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.

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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.

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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.

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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. 

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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.

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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:

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