[This message has been edited by SusanM (edited 06-07-2003).]

[This message has been edited by SusanM (edited 06-18-2003).]

It is definitely a bigger problem than most people realize. Realistically, there isn't much we can do about it. Herpes isn't the only disease that's being effected in this way -- I can assure you of that. Welcome to America -- the best country in the world, but FAR from being perfect.

True.

[This message has been edited by SusanM (edited 06-18-2003).]

With Valtrex commericals coming on every 22 seconds, I really do not feel there is an effort from drug companies to create a vaccination. Sadly, there is a lot less money in curing a disease versus handling it. What makes the scenario even worse, Valtrex is not even a one-hundred percent guard against passing H. I'm sure millions are paying outrageous amounts of money for this drugs that do not even provide full protection.

H has become the untouchable virus. It will not kill you, so lets not worry about it since most people do not even realize they have it. This seems like the average drug companies idea towards H. I hope I do not seem so negative.

I don't think you are too negative.

[This message has been edited by SusanM (edited 06-18-2003).]

LOL, I wouldn't be surprised if the drug companies found a way to get this message board shutdown if it ever became evident that it was helping us all collaborate. Herpes is the secret disease that really works to the drug companies advantage. Most people are embarassed/afraid to talk about it in real life, so its really hard for us to even band together to get something done because of that. Honestly, there is one way to get a damn cure. If we were able to pool everyone with herpes together and make a pact to not ever buy valtrex, acyclovir, famvir, zovirax, etc ever again. Then they'd be forced to at least come up with some alternative.

Hey Everyone,

This topic of conversation is very frustrating. I agree with everyone about their opinions. The drug companies don't care about us. Instead of working on a cure, they would rather 'cover' our illness with medication. Why cure us, it would put an end to us buying drugs from them. This dilema makes me so angry, I can't even begin to tell you.
I suggested on a earlier post for everyone to just stop buying valtrex, etc and try using natural suppressants like OOO and OLE . Just try it for a month or two. Just sacrifice the annoyance of your breakout for a greater good in the long run. It's not a guarantee but an attempt, and thatis the only thing we can hope for know. Then the companies would get scared and wonder about the sudden decrease in sales. We should make it a anti herpe medicine month or something.
What do you guys think?>

Originally posted by Hopeful03:
It's not a guarantee but an attempt,

What do you guys think?>

You know what really makes that statement so powering is the fact that that's all Valtrex is at the end of the day. Valtrex advertises that it hopes to make OBs easier and to reduce reoccurence but even that is not 100% accurate. Many people pay large amounts of money to hope it works even 50 or 6o per cent effectively with no garuantees.

Given the lack of total safety, non-H people might be even more unassured about those of us with H because no drug offers 100 percent protection.

I’ve also mentioned boycotting in a few previous posts. The problem is, everyone on this board is not near enough people for Glaxo SmithKline to even notice. We need millions of Valtrex, Famvir, acyclovir, and Zovirax users to suddenly stop buying all at once, which would require a whole lot of publicity.

I know I will never buy those drugs because I believe that nature’s medicine is perfect, man can’t improve on nature. What we need to do is experiment intelligently, keep informed of the latest medical knowledge, and follow the political side of it. I believe medical ozone is the cure, and that the FDA, gov’t, and drug companies know it. Doctors in the US have been thrown in jail for using it, even though it has been proven safe and is part of mainstream medicine in Europe and Cuba (which has one of the best public healthcare systems on the planet, believe it or not). Medizone International would have been the saviour, but funding fell through due to investors being scared off because of the FDA. I‘ve been following the politics for a year now, and every promising treatment has been snuffed somehow by the FDA.

We have to support organizations that are trying to get ozone and oxygenation treatments legalized. These would include IBOM Foundation (International Bio-Oxidative Medicine), Ed McCabe and the Oxytherapy website, International Institute for Oxygen Therapies. If it wasn’t for these organizations, I wouldn’t have discovered oral H2O2 which I think is the reason I’ve been OB-free for a year.

Nonexist~~

Have you had ANY symptoms since your oxy-treatment? Do you feel as if you are cured? Also, did you have many symptoms before you tried this? Sorry for all the ?'s I'm just asking because some people don't have many symptoms and when they try different treatments they say it's working when really they don't have symptoms anyway...

Just wondering...

I wish there was a way for the few of us on here to get together and really DO something about public awareness about these drug company issues. I believe if we try hard enough...we can do something...

Sadgirl,

I wouldn't hesitate in the slightest if you guys wanted to get something started. We may seem small in number, and we may have limited funding. But, we can surely start somewhere. And believe me, there are plenty of significantly wealthly people who would donate/contribute to the financial needs of our cause if we proved our determination to get something done.
Our FIRST step would be to compile all of the resources we already have. We should stress getting the message out to existing herpes related message boards and information sites.

Sadgirl: Yes, I get the odd blemish, but it’s impossible to tell if they are herpes or not. Mostly these are orally….I was infected orally and genitally at the same time. Plus, I had unbelievable OBs on my stomach and chest – I was in a BAD way! It started with a mild genital OB (about a dozen small sores, itching, no pain) and this is when the doc gave me Famvir. OB got worse and worse, sores started getting bigger and spreading upwards. In the end I had probably 5 dozen large sores that stayed for over 8 weeks! That’s when I went on H2O2 and DMSO. I kept at it for about 2 months (3 for the DMSO) and still got OBs, but when things finally settled down – I stopped to see what OBs would be like with nothing but vitamins and herbs. I don’t believe I’m cured….yet….but I truly believe the oxygen treatments significantly boosted my immune system and eliminated a large amount of the virus. I can’t describe the amazing energy and mental prowess that drinking H2O2 gave me. I had die off effects at first, a lot of acne, my sinuses drained all of a sudden and I was able to smell things I wouldn’t normally be able to smell. I was seriously blown away by how I felt. I think this could cure herpes if one were to take it long term, but I am still not sure enough yet that it would be safe over a long term.

I made a promise to myself to cure this virus, and I have never broken a promise to myself. This will be a tough one, though – LOL.

Nonexist

Nonexist: are you sure the obs on chest and stomach were h?

[This message has been edited by SusanM (edited 06-18-2003).]

I’m pretty sure it was herpes because I’ve never had anything like that happen before. Although I could never say with 100% certainty. Each new sore seemed to be further and further up on my body. I started oral H2O2 when they started above my bellybutton, which I think caused a healing reaction because they started coming faster. I shouldn’t have quit before they were healed, but I did. However, I haven’t had anything like that since.
With regard to organizing ourselves to further our cause, I am willing to do whatever it takes. I’m one of guys you’ll see in jail for trying to save humanity, labelled a lunatic, LOL. In fact, if I thought I could get away with it, I would have the FDA reduced to rubble and ash. But, what we can do is learn and pass it on, educate the public. If all the people knew how our health is being sold, things would slowly change.

Nonexist

I would do this, too, though right now the acyclovir is the only thing that is really working for me http://www.healthboards.com/ubb/frown.gif

As time goes on, things should improve. I am not sure if I would be willing to try to do it now as my symtoms were really awful----not many OBs but constant terrible pain, etc., getting under control now. Sometimes it feels like I have a swarm of angry wasps in my pants!

Let's work on this. How can we get the word out? There are no support groups in my area and no way that I know of locally to get the word out here, besides walking up to strangers with cold sores!

Mutz

Originally posted by mutz:
I How can we get the word out? There are no support groups in my area and no way that I know of locally to get the word out here, besides walking up to strangers with cold sores!

Mutz



oh man you are hysterical http://www.healthboards.com/ubb/wink.gif.... I think we have a few options.
1) we can just post on this site to have everyone send their email to one person and then do a mass email to everyone. Also, we can hit other sites.

I guess the question is what do we plan to do with everyone's consent. Write a letter to companies or government?, protest drugs?. Start a march?.. any ideas?

I don't know what to suggest.

[This message has been edited by SusanM (edited 06-12-2003).]

[This message has been edited by SusanM (edited 06-18-2003).]

I am willing to do anything it takes also. We all need to really think this through and while yes, we are just a small number of people here, I think we all have STRONG beliefs that we CAN do something and not suffer in silence forever. I need to read up on this AuRx stuff as well as other information about these drug companies...

Lets all keep ideas coming!!

I'm going to throw my 2 cents in here. I don't know to what degree the big drug companies might be suppressing competition and monopolising the herpes antiviral market, but I can't see how boycotting their products would make them change this.

There is nothing that says they have to do anything in the area of herpes! If a boycott was to make it unworthwhile (if that's a word LOL) for them to continue to produce and market their antivirals, they'll just pull them off the market, period. It won't make them change their direction and suddenly grow a conscience and start pursuing a cure or even better treatments. Why on earth would they do that if they're not inclined to do so now?? As keeps being pointed out, a cure will not bring recurring profits.

If we boycott the currently available antivirals, we will only shoot ourselves in the foot; I don't see that it would change the minds or policies of the drug companies. And even if they did abandon the antivirals, that doesn't mean they'd just sit back and watch while some other company (like AuRx) moves into the territory they just vacated.

Assuming the big drug companies are actively monopolising the antiviral market for herpes, I don't know what the answer is to changing that. Considering how capitalistic the US is, I would doubt the answer could be found in the US at all. We're becoming a much more "global village" (to quote a Canadian *g*) and perhaps the answer lies in removing much of the power and focus of the drug issues from the US altogether. I'm not trying to be anti-US but suggesting that, with the acutely capitalistic focus of the US (meaning profits tend to be considered a higher priority over non-crucial moral and social considerations) and the huge power that huge profits can bring, a more morally-focused solution may be more likely to be cultivated in other areas of the world. Mexico is one possibility, with AuRx already being there.

My 2 cents.

TheOneInFour

[This message has been edited by SusanM (edited 06-18-2003).]

[This message has been edited by SusanM (edited 06-18-2003).]

[This message has been edited by SusanM (edited 06-18-2003).]

Ouch, 1in4, where'd you get that from? No other company in the world is out to make money besides companies in the US? What do you think drug companies like AuRx are in business to do? To make drugs? Nope. They are in business to make money.

Originally posted by SusanM:
I doubt there would ever really be a big boycott that would have any real impact, and that's probably not the answer, but I don't think the public (and there is a large herpes infected public) is really aware of how our options are being controlled by company profits and politics.

Don't doubt, how are we supposed to make a difference if you will doubt before you even begin. We had a good attitude about trying to make a change, some people are willing to sit back and allow the government to dictate what happens to us. I am not one of those people. That does not have to be the case, we have the majority of the vote since our numbers are great. If you want to make a difference the first step is to believe that you can. If you have anything that holds you back, don't even bother uniting with this group. So who's with me? lol

Originally posted by SusanM:
It isn't that the drug companies are monopolizing (spelling?) the antiviral drug market, it's that antivirals are all that is being marketed period.

Well, that's pretty much what monopolising is (we spell things a little differently up here http://www.healthboards.com/ubb/wink.gif ) -- they (supposedly) control what goes on the market and make sure it's their own products that are there.

I doubt there would ever really be a big boycott that would have any real impact, and that's probably not the answer, but I don't think the public (and there is a large herpes infected public) is really aware of how our options are being controlled by company profits and politics. I think most people really believe scientists just can't find anything better.

My own feeling is that the truth lies somewhere in the middle of all these extremes. I do think the drug companies are probably exerting a lot of muscle to ensure their tenure in and control over certain drug markets. I also know that viruses are very tricky critters and creating cures and effective solutions for ourselves is not straightforward or simple.

Plus, even when/if a potential solution is found, it takes a LONG time (many years) to test both its effectiveness and its safety. To be honest, I kind of have to shake my head when people expect drugs to be released quickly on the market and if they're not it's automatically due to a control or power issue. That may indeed be a factor, but not necessarily and not necessarily the only factor. We complain when drugs become available and we find out later that there are dangerous side effects. And we also complain when they take the time to adequately test them before releasing them. We can't have it both ways.

In reality not many are looking, and those who do are starting to admit that even when they find something it's not likely to go anywhere because of the politics of it all. I think if nothing else this is a public awareness issue. If one in six is infected that's a lot of people. Hey, wasn't Bill Clinton even infected? lol

Well there's a juicy rumour! Sounds too convenient to be accurate though. LOL Btw, it's one in four women and one in five men, on average in the US. I believe those are CDC stats.

You may be right that it's a public awareness issue, but what can be done about it, becomes the question. Awareness is an essential first step, but unless it leads to a solution of some kind it's more likely to have the opposite effect of suppressing assertive action because it can create depression, cynicism and despair.

Boycotting, I still maintain, is more likely to simply get the stuff taken off the market altogether, not to bring new advances in research. I think the politics of it sound too deeply entrenched in the US for major changes to happen there, assuming we're all not being overly paranoid to begin with.

Maybe I'm just cynical but I don't see popular US culture becoming more sensitive or compassionate about a non-life-threatening issue like herpes. I still think any answer is more likely to come out of a different country. Then it becomes an issue of access, but with a global market becoming more available to the individual via the internet that may not be a huge issue.

TheOneInFour

Originally posted by another20percenter:
Ouch, 1in4, where'd you get that from? No other company in the world is out to make money besides companies in the US? What do you think drug companies like AuRx are in business to do? To make drugs? Nope. They are in business to make money.

Sorry 20%er! (and welcome back!!) I didn't mean to offend. I wasn't implying that only US companies are like that (which is certainly not the case!). I actually was going to put on my original post something like "...and then we'll probably have to worry about the power AuRx would have if they succeeded" but decided against it. Guess I should have gone with my first instinct. LOL

What I meant was that with US culture being very ingrained in capitalism as an ideal, the *country* is (IMO) unlikely to make major changes that would prevent or limit a major drug company from having that kind of control over the drug market if it would cut into their profits. They're doing precisely what the American cultural ideal says is the thing to do -- they're making money hand over fist.

Look at the enormous difficulty the US has had in trying to keep Bill Gates and Microsoft from monopolising the computer industry, and far more people are effected by that situation than people wanting a non-essential treatment for a non-life-threatening virus like herpes.

And look at the enormous difficulty there still is in getting the tobacco companies to take responsibility for the VERY life threatening effects of their products. From where I sit, it seems to me that the US culture is not one that *easily* puts moral or social considerations above those of profits. It's not that it's never done, but the profit ethic is so deeply fundamental to US culture that it's extremely hard to pierce through that wall.

And absolutely I agree that companies in other countries, and even other governments, are not above placing profits first, but I don't see the kind of focus, power, intensity and aggression of capitalism entrenched in many other countries the way it is in the US. Maybe I'm just naive (which is entirely possible LOL) but I think that because this profit ethic isn't quite as deeply entrenched in other countries the way it is in the US, it will probably be easier for other herpes solutions to be developed in those countries than within the US. (Prime example being AuRx doing its R&D in Mexico and not the US.) In the US the precedent for drug monopolies has already been established, which is a lot harder to change than starting from scratch in another country. That's what I meant, which is different from saying other countries and their companies aren't interested in profits.

2 more cents, which I hope clarifies the first 2. http://www.healthboards.com/ubb/smile.gif

TheOneInFour

Hey, no offense taken here! You are raising some good points - as if that were anything new.

Hey, speaking of AuRx, what's the latest scoop?

I agree with everything oneinfour said (since everything I said was picked apart) and I wish I could tell that to the American researcher (who obviously is no authority in his line of work) who blamed drug company profits and politics for no new treatments being on the horizon or being introduced for over 30 years!

[This message has been edited by SusanM (edited 06-18-2003).]

Susan,
you don't have to edit your information to satisfy anyone. You are entitled to your opinion as much as the next person. I agree with YOU completely. And for those that don't ---We agree to disagree--- works well.

Susan,
you don't have to edit your information to satisfy anyone. You are entitled to your opinion as much as the next person. I agree with YOU completely. And for those that don't ---We agree to disagree--- works well.

Originally posted by SusanM:
I agree with everything oneinfour said (since everything I said was picked apart) and I wish I could tell that to the American researcher (who obviously is no authority in his line of work) who blamed drug company profits and politics for no new treatments being on the horizon or being introduced for over 30 years!

Susan, why did you take out the text of your posts? http://www.healthboards.com/ubb/frown.gif I hope it wasn't because I posted differing views. I hope you didn't take offense to me "picking apart" your points -- I like to do things systematically and methodically, is all. http://www.healthboards.com/ubb/smile.gif I certainly didn't mean any offense or disrespect by it.

Everyone has and is entitled to their opinion and I don't think any of us has the whole answer -- we all have a piece of the puzzle. And it is when we combine our ideas, thoughts, opinions, feelings and insights that everybody benefits, including the many lurkers who read these posts.

TheOneInFour

I agree that it’s much more likely for a cure to come from another country, just because of the structure of the system. Already, we see Europe embracing oxygenation technology, and even a dictatorship like Cuba providing a level of accessible healthcare that puts even Canada to shame (although, that’s not a difficult task nowadays). There is a common perception in the West that foreign healthcare is quack medicine. This view is perpetuated in the media so that we all think that ALL foreign doctors are like the guy on the Simpsons with the accent. This brainwashing is very intentional so that we won’t discover that there are other systems that are less profit driven, and much more compassionate than ours. Now that we’ve been discussing this – think about what the establishment has to gain from this perception. We place everything that’s not American or Canadian in the category of quack medicine. So, oxygenation comes along and is as close to a miracle as we’ll get – but it’s not big business, so it’s quack medicine! You watch though – when they find a way to make it big business (via new laws, remember they do WHATEVER THEY WANT), then it will be a miracle only for the rich. Mark my words…please!

People do not understand how deep we are in this mess. How many of you and/or your children have allergies? Do you know that allergy related deaths have increased 800% since 1983? Research now shows that this is due to vaccines, antibiotics, processed foods, and pollution (i.e. less oxygen in the atmosphere). They are killing our children with vaccines, basically. It’s happening already, can’t you see we are dying off? Children are supposed to be the embodiment of vitality. My mother is a teacher, and she has to have loaded hypodermic needles in her desk because there are children (more than 1 or 2) in the school who have 20 minutes to live if they come into contact with anything with peanuts in it. Some of them will go into cardiac arrest if they merely SMELL it. The school has banned peanut butter, for God’s sake! What will happen is the range of sensitivities will increase, as our livers (the important organ in allergies) get more overloaded with toxins. Soon, it will be impossible to stay away from simple foods and substances that will kill these allergy sufferers and allergy related deaths will go up probably 2000% in the next 20 years. If you think I’m wrong, remember that in 1983 when the “radicals” said that allergies are going to spiral out of control, people didn’t believe them either.

What does this have to do with us and our herpes? Well, we have to look at the big picture – things are going downhill on every front…and fast. The whole system has to change, natural medicine has to take precedence over allopathic medicine. Things like oxygen therapy have to be researched. My father says to me, “People won’t get it. You can prove it to them right in front of their faces, and they still won’t get it”. And that’s the reason why human life on this planet will not last too much longer. So, lets not forget the original spirit of this post – create a unified force to fight our cause and our victories will be victories for all people.

Nonexist

Nonexist,
beautifully said. I think it's important to do something and not look back. Not to think " oh this could never happen" or "I could never make a difference". I was a little disappointed actually with another post we had going about coming together as a group to make a difference. As soon as one person showed a opposition, the belief to do something was lost. I'm sure we all want the same thing- a cure- I don't think we need to settle for a cover up, and constantly live in fear of having another OB. Obviously what's been going on hasn't been working so we need a fresh, new, bold approach. We need to take a chance and do something radical. We need to go outside the box. People are surprised when governemnt conspiracy is brought up. Why is it so hard to believe that a cure can be hidden to make a profit. It seems that profit is the foundation behind many thing- our laws- our medical professionals. Herpes is on the list as well, wake up people.

I tried to post the other day and I was getting a message that I was banned from the board. I was upset, and the only function I could use was edit. So I started to erase my posts. Somehow, I got the previous post in, and now I'm able to post. I get too sensitive sometimes. I couldn't believe they were banning me, I figured it was because of what I posted on this subject. Sorry all. Maybe someone could start another subject. Susan -- If I disappear it's cuz I was banned.

SusanM, I don' think it is you that is banned, per se. Are you trying to post through AOL? If so, the IP address is one associated with AOL, not you. I was receiving the same message earlier and found this out under a frequently asked questions section.

Try either clearing your cache or posting through another browser like MSN or Netscape.

hey
that happens to me too, i'm on aol. Out of the blue I would get banned and wonder why, and I would write the moderator.Then a day later I would be back, wierd.
glad your sticking to your views http://www.healthboards.com/ubb/wink.gif

you guys are complaining about having medication but no cure damn i dont even know where to get the medication out here any one knows whereto get them in jamaica i dont have a credit card to order from there.help

there are somany drugs availabletoyou i just use hydro peroxide it eases the itch and makes it less painful
i go without underwear at home becauseit hurts somuch when it touches. does anyoneelse have this issue

[This message has been edited by secret_san2000 (edited 08-20-2003).]

you guys are complaining about having medication but no cure damn i dont even know where to get the medication out here any one knows whereto get them in jamaica i dont have a credit card to order from there.help

------------------
Tough but coping

Secret_san

I'm in UK - I wish I could make a useful suggestion to you. Maybe someone else can... Hasn't any doctor suggested it? Or been able to supply it at all?

While I'm here, having had a quick read of this thread, no-one is obliged to take Valtrex if they don't want to! And I've found that 2000 mg per day stops an attack in its tracks. So it's not all bad!

Garnet