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Flatfooter

This is the last time Im posting this.

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Flatfooter

Hello all,

I’ve been on this site on and off for the past year, and have come to know many of your stories. Or perhaps more fittingly your suffering, how you struggle with this awful disease as I have. But Im not posting to talk about that. Im sure me reverberating the same sentiments as you have are not necessary. Just know that I have lost the best years of my life to this disease as Im sure many of you have. Enough said there.

Im here because I have news for you, it’s a glimmer of real hope and an actual timeframe for it to reach us. Before I elaborate let me first say that Im not here for your money. In actuality, Im here to tell you to keep your money. Im not advocating miracle cures via secret herbal remedies or clandestine breakthrough pharmaceuticals from other countries. Because they just don’t exist.

To begin first you should know about me.

Im not a physician, but I do have four college degrees, including an advanced degree, all from real universities. I work in a very respectable profession and perform services for various individuals throughout the U.S. In such employment Ive been granted access to privileged information that is sometimes unbelievable to say the least. Rarely do these discoveries touch me personally, but about a year ago while contracted to a group of “individuals” (they were pharmaceutical executives, major players) I watched over a impromptu meeting regarding the immediate future of herpes research and pharmaceutical development.

Now before you read further, know that I will not answer questions regarding what follows, nor will I give names or locations. I have a professional obligation and this post alone is extremely pushing those limits as it is.

Im not sure if many of you have viewed the big picture, but fairly recently there has been a flurry of activity in herpes research, many avenues are being investigated, with very promising alternatives to just episodic treatment being pursued. Well this is no coincidence. As the limitations of Acyclovir and its derivatives are being realized , the race is on to monopolize the market when the their profitability plummets.

During the meeting many specifics were discussed. Including current available prescription antivirals, and most importantly future drug therapies. Being who they are they were very careful not to use the word cure. Instead they used terms like lifelong inhibition and eradication. Which translated… means cure.

Being very captivated by this, as I have a vested interest, the discussion became more and more interesting. That is where I first heard about this message board. Apparently, this message board, and others like it, are a major reason research is taking its current course. Awareness is key, and they all commented on how well the public is educated on the current status of Bio-Technology. And how breakthroughs are impossible to stifle in favor of less effective treatments. Essentially, the opinion was that in light of growing public scrutiny, the only realistic course for current research is a permanent solution.

As the discussion progressed, names were mentioned, researchers and companies alike. And to my shock, several compounds aimed at lifelong inhibition have already been developed, and are currently in the pipeline. And by lifelong inhibition I mean cure in the practical sense. No continuous treatments, no symptoms, no viral shedding.

However, there are some negatives in the equation, negatives that are three fold.

1. Timetable. But, this timetable is fairly firm and is legitimate, so its something to look forward to. It was the consensus, with factoring in developing the most suitable delivery method, clinical trials, manufacturing time, etc., we will have an available cure within the United States in 8-12 years. Not another suppressive therapy, or vaccine that only works 2/3 of the time, a permanent solution. This timetable may be shortened somewhat should you pursue treatment in another country, but that is a variable they did not consider.

2. Toxicity. It was also the consensus that since Herpes Simplex is latent in the neural ganglia, the compounds aimed at this organ for purposes of viral eradication are and may continue to be very difficult to tolerate. With side effects more comparable to chemo than other antivirals. Also, these effects may be further complicated by viral reactivation with symptoms similar or even worse than the initial outbreak.

3. Price. Prepare yourselves. The last and final consensus was that the developmental costs, combined with the inpatient hospital care needed for such intensive treatment, suggests that by the cessation of treatment one will expect to have paid between ten and twenty thousand dollars. Though these figures are not set in stone, the initial costs should fall somewhere in this spectrum but should lessen over time. **********************

Though other matters were discussed in the meeting, none were more captivating than this. I struggled with whether or not I should post this so soon, but I knew that this would help many on here cope with the waiting. I just wanted as many of you as possible to feel the relief that I did knowing that you are not waiting indefinitely. Its coming, just be patient.

In closing, I would like to reaffirm that I cannot really answer any questions. I know no more than what you’ve already read. All I can say is that when if comes to your health know this.

1. You need to keep yourself healthy and strong while your waiting, don’t wither.

2. You need to be smart with your money. Miracle remedies and internet cures are bogus! Save your money for when you need it. I wont say which, but donating maybe $5.00 a month to any of the legitimate charities wont hurt. I’ve given about a $100.00 so far just so you know.

3. Keep looking forward, never back.

Good luck to you all….

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ntdc

when merk developed gardasil their analysts determined that too few people would be willing to pay $500 to recoup the costs. AuRX has said on their website pharma companies have cited the "high " cost of their treatment ( a few hundred dollars) as a reason not to develop it. So i have trouble believing any company would spend millions in developing a drug for which the market is extremely small. I can't see how insurance would only cover this cost in the event of life threatening infections (rare).

Furthermore 7-12 yrs is highly optimisitic, it could easily take that long just for the clinical trial process. If there is a drug candidate currently available I would believe it.

Sorry to be negative but i have trouble believing any of this.

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Flatfooter

...

Dont believe it. But, as they knew and continue to know.. 10k is nothing. People would happily pay 10 times that for a cure, out of pocket. I know I would. And it just so happens, I dont have to rely on my insurance for this. Sorry if you do.

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Pura Vida

Normally I try to buoy the spirits of the people who have just been diagnosed, but I'm afraid that I have to agree with ntdc on this one. I can't argue specifics on the clinical part, but a big chunk of my college experience was focused on healthcare and and society and, frankly, this is pegging my skepticism meter.

Big Pharma clearly understands that people will try to ingest just about anything if they are told to do so by a physician, whether it really works or not. Still only a fool would go through chemo therapy risks and side effects just to beat a few painful sores. I certainly wouldn't now that I have found something that works (for me) for about $10 per year.

The best part of this is the 'stay healthy' advice. I agree! Get enough rest. Don't strain your body with nonfoods like drugs. Most of all, take care of your skin, even the parts that don't have outbreaks. Most of all, be prudent about the treatments you try.

pv

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Flatfooter

Hmmmm

Ive already had a few posts removed for colorfully pointing out that self proclaimed experts on here that arent doctors, should keep their pseudo-medical opinions to themselves. I was there, I checked credentials, I investigated the players to be sure.

However, if you've accepted a fate that no one should endure, and have resolved yourself to slowly wither away, thats fine. But go do it alone and stop bringing others down.

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Shayna

Flatfooter, Please be respectful to all members of our community. It's not okay to speak to others in a condescending and dismissive manner.

Feel free to PM me if you need further clarity on this subject.

Thank you,

Shayna

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Flatfooter

....

No clarity needed. Its become increasingly aware that most on this board enjoy being sick, and are terrified of the possibility of actually getting their lives back. But thats ok... its why I don't get on this board much. Why communicate witht those who stifle hope.

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commo

Just for the record, let me say that I appreciated your posting Flatfooter.

I have struggled mightily with this disease since college and just when I was starting to lose what little hope I still had for a cure, I saw your message.

Anyway, thanks again.

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HC-Support-Team

Hi Flatfooter :wavey:

First off I want to commend you on your post, it is honest and insightful and I am sure many of our members will find it interesting and give them food for thought on what may be around the corner.

Try to relax and accept some of the criticism that is posted. It is not personal, it is just other people's viewpoints based on their own experience and the limited information that you have shared.

In regards to your posts, only ever has one been removed and it has now been reinstated, minus the language. This post was removed for one reason only and that is because you called another member an asshole.

I can see that you felt frustrated with the member, however, there are other ways to get your point across and the best of these is to help them understand your viewpoint. If you can't then agree to disagree, diplomatically.

You can read our Forum Guidelines here for reference.

I don't think anyone appreciates being sick, Flatfooter, especially not those who are coming to a Support Forum for help in coping with an incurable disease. The people on this forum are people from all over the world, from all walks of life, who are personally affected by the condition that you and your friends are trying to determine the fate of, they are the public and they do desperately want a cure. For this reason I think many people will find your original post fascinating.

Some people will naturally disagree with you, so please keep an open mind. This happens not only on a public forum but also in every aspect of real life. How you react to someone disagreeing with you is an important choice, and on here it means reacting without personal attacks or insults toward others.

Shenda

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Pura Vida

The course of this thread speaks for itself. I’ll believe the claim when a licensed physician offers it as treatment or it appears in a peer reviewed journal where credentials can be properly checked.

pv

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pingu

who has that kind of money

Dont believe it. But, as they knew and continue to know.. 10k is nothing. People would happily pay 10 times that for a cure, out of pocket. I know I would. And it just so happens, I dont have to rely on my insurance for this. Sorry if you do.

It is not about being willing to pay for a cure. It is about having the money for it. Personally I don't have that kind of money, nor do I have anything to sell that would amount to that sum (10k-20k).

Although it is nice to think we are being heard it would equally nice to think these people live in the real world and know what they can realistically expect from potential patients. After all they are not selling a magical potion to live forever...even if they were doing this last thing I still wouldn't be able to come up with that kind of money, dam%$£!!! :madd::secruity:

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Flatfooter

;)

Guys and Gals, if I didnt have confiedntiality to protect.. I would post so much more... Hang on, and good luck to you all..

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Kqk

Hope

I had to return to this post and re-read it. I prowl the internet everyday looking for a glimmer of hope. Perusing sites that talk about gene therapy, Nano - stuff, MiRNA's, etc. Interestingly, they are able to actually view an atom in real time. I believe there will be a cure soon. I loved reading the information from Dr. Bloom indicating that he was targeting HSV-1 Keratitis because he would be able to apply for orphan drug status and get his treatment fast-tracked.

I also believe that whatever pharmaceutical company or university or scientist does get to the market first with a cure, the rewards will be overwhelming. A cure for herpes will happen because so many people need the treatment. Herpes is not deadly, but the amount of money that stands to be earned by being purchased by such a large population cannot be ignored.

Flatfooter, any updates?

Sanner

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almost_free

In the meantime..... Something that has been safely used since the late 1800s. Without chemotherapy side effects, and a lot less than 10K is... Ozone.

But I agree with Flatfoot. A lot of people are married to their suffering, have come to identify with it, and already have it made up in their mind that there is nothing that will work. In spite of of coming on these boards.

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Hawker12

Flatfooter,

Thanks for the post! You obviously had some important insight to toss out. People can and should take it as such. Thanks for the info!

Cheers!

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MsLucy
... However, if you've accepted a fate that no one should endure, and have resolved yourself to slowly wither away, thats fine. But go do it alone and stop bringing others down.

I have to agree with Flatfooter. There are those on this forum (as I'm sure with any support forum) who revel in their misery, and use it as a shield against getting involved in life. They remind me of my mother... when her eyesight got too bad for her to drive, she whined constantly about being stuck at home. Yet, whenever my sisters or I offered to take her somewhere, she'd manufacture some lame excuse not to go. Same thing. For those people, even when a cure does become available, there will be a hundred excuses not to partake of it.

Thanks, Flatfooter for sharing this little bit of hope. I believe a cure will come, and I'm hopeful that many (particularly those who are still young) will be able to enjoy their lives herpes-free.

And, for what it's worth, I don't think you were out of line at all in your response. It seems to be just fine for those who you referred to in your post to spill negativity wherever they go, and the rest of us are just supposed to tiptoe around the crap they leave behind. Agreed, it's their right to say what they feel, and to counter any opinion they see fit, but it's every else's, too... or at least it should be.

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CurePlease

I'm generally a skeptical person but feel like Flatfooter's info is legit. There's got to be various theories and experiments going on that we don't hear about.

Also have to agree with MsLucy and Flatfooter. Been here a couple months and have gotten the impression that some folks here secretly like having this infection. Some seem to rather discuss anything except potential cures and what we can do to work towards that. Guess it gives lonely people something to talk and connect with others. Weird to me but you will meet a few here.

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Sabrina32

does anyone know where this guy is? has he posted any more info regarding this?

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Sabrina32

unfortunately it appears that the ozone treatment is a hoax. its a shame the hsv sufferers are the target of so many false cures.

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lost99

I agree that some people use herpes as a crutch, self pitty is an undeniable normal with alot of people. And while I'm at it, there are a ton of people that come here and play the victim role. Its always how someone lied or cheated on them and then all the sudden they got herpes. Only rarely do I see people on here taking responsibility for their role they play. Failure to protect yourself, maybe a permiscous life style.

Dont get me wrong their are people who were responsible and just got dealt a bad hand. I just know the loose life style people are living more often than not. Heaven forbid you have to pay some consequences. I will state that I am not exempt from my comments. There was definitely weakness and failure on my part, resulting in consequence.

Flatfoot you were by no means out of line with your post( excluding asshole statement)

Its not right to be made to respect others views or tip toe around their negativity.

God bless all of you that share your true real life storys on here. Trying to help others with legitimate information.

Nay saying does slow progress.

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