A bit of a rant.

As some of you know my grandson has the CF gene. His condition had finally reached the point where he was near death and with nothing to lose we tried a product from one of the supplement companies thats targets the immune system.
In less than a week we began to see the effects the product was having on his body, which was no less than amazing. Chase is now 4 years plus from the time in which he was to pass from this life. Since that time we have seen an additional 4 kids lives saved by this same product or its milder version for infants who cannot swallow pills. 2 of whom had RSV which has only a 40% survival rate, 2 more with CF and one infant with severe pneumonia and not expected to survive.

The common link between these illnesses and genetic defects is mucus. The product in and of itself does not do the healing but the body itself doing the job with the boost of the immune system provided by the product. Others have used immune boosters from other companies with little effect, after a great deal of research I have found the formula used by the company that makes the booster we use is unique.

Now for the rant. For the last 3 years I have tried to get people in the position to find out more about the effects we have seen and to do tests to verify what can be done have all turned their backs and stated that they do no not want to even talk about it. Could it be that the drugs and what all else they use to treat these problems which are very expensive more important than saving lives?

The cost for the pills that Chase uses is less than $20 a month, and the powder for the infants less than $12.

Is there something here that I am just not understanding or what.

Note on RSV, this is a common virus that is on the rise of those under the age of 5 being very easily spread, as well as being common cause of death in the elderly.

http://www.cdc.gov/ncidod/dvrd/revb/respiratory/rsvfeat.htm

http://www.cff.org/AboutCF/

Hi, unfortunately -companies don't don't seem to see the "whole picture"/
Would appreciate info, as local couple may benefit from hope.
Just dmail me.

Don,

Have you considered approaching the media about this?

Karen Marie

Snipe, now this is a rant worth ranting about. I'm thinking of getting you your very own soapbox, because you should have one. This is simply ludicrous, but you already know that. When there is a medicine/supplement/whatever that can help to save someone's life and no one wants to admit or discuss it then something is very wrong. Whether it's over money or any other "reasoning" it's just wrong.

I wonder if there's any way for you to help spread the news of the wonderful benefits your DGS has experienced? Maybe just skip all the heath care providers and just do it on your own? I'm thinking of a support group type thing or a website, a letter to the editor or your paper (just telling of the benefits)....anything that would get the word out and help those who aren't getting this info from their docs, etc. This info is too important not to be shared. What about posting the info on CF support site type places?

Good luck with this...with this info you can really help to change people's lives. Don't give up because some people don't want to talk about it. You just talk about it every chance you get, share it with anyone and everyone who wants to listen....and even those who don't! :-)

Well I was busy this weekend so I didn't get to keep up on here at all.

I will start by saying the company that makes what we are using is unaware of what their products can do. We did what we did because we had hit the end of the line.

The physicians would love to have the products tested further but the money changers higher up have threatened their jobs if they even so much as suggest the use of the product to their patients.

My hands are tied because we became distributors in order to get a discount on the products before I knew of the FTC rules that can have me arrested and fined if I speak freely of the results we have gotten and by my saying the product by name since it has not been blind tested.

There maybe a way to do it without getting into trouble but I am not sure how to go about it.

As for CF sites I have made the attempt but apparently there have been so many snake oil salesman that they get very hateful of anyone who even mentions something outside the realm of the medical community. It's the whole internet scam fear. I have even offered to send a bottle of the stuff to anyone who wanted to try it for free. No takers and I can understand why.

Which brings me back to the rant, the only real people that can make the difference are the ones at the research centers and the like and they for the most part ignore me even after I offer to send them Chase's medical records to prove what I say is so.

The only real reason for the rant is yet another child under the age of 3 has died when there was a real chance that it could have been prevented. Whatever happened to the Hippocratic oath?

Maybe I should go to a doctors forum and see what can be done there.

Snipe, I am so sorry.
Unfortunately the Pharmaceutical companies know there is no money in a cure, for anything.
I agree with Wuvie , talk to the press and that could help so many lives.
TY for posting this thread. God bless you and your baby boy.

Sorry about not commenting about wuvies suggestion about the press but the same goes there. Until I get arrested and can do it in such a way as making it interesting news they are not interested, so unless I am willing to go sit in jail and suffer a $50,000 its a case of we'll call you.

:( darn. If I had 50 grand Ive give it to yaz.

so as a distributer, you couldn't go to a TV host, like Oprah or Ellen,(just an example) and tell your story?
Montel Williams has MS, I would think he'd be more willing than others to listen....

I've heard of that RSV. There is finally a vac for it for children. It is an oral drop given in 3 intervals and they are very particular about the timing being critical when the children get it. So don't miss any appointments! Thanks for posting a link on that.

I think, unfortunately, when it comes to modern medicine, if it makes more money to treat than cure you won't get near as many parties interested in exploring a cure.

sallyg the FTC in conjunction with the FDA and the Pharmaceuticals have set new regulations that any claim made of the benefits of a substance that has not had a series of test done for each and every thing that the substance can do is prohibited, which can result in arrest, heavy fines and imprisonment if you have the ability to make a profit from it no matter how small or even none at all. If you have no connection in any way you can claim anything you want.

There where 7 arrested in Irving ,Texas not to far from me about a year ago. So I have to be very careful.

Tir_Na_Nog the vaccine is new which is why CDC pulled the info on RSV which stated the low survival rate for infants under 5 being only 40%. Problem is they can catch it at the hospital when they are born which is also the number one place to contract it for both the infants as well as the elderly. They also pulled the statement that it is incurable and only elude to it without really saying it even with the vaccine, the vaccine only lessens the severity of it.

The core of it all is mucus that the body starts to produce and does not stop producing that they can not control, so you get sick repeatedly from that point on from things like pneumonia, RSV, CF, asthma so on and so forth. So what medicine cannot fix your body can, but as far as my research has been able to determine the product that this one company makes is the only one that can cause the body to do it. I have spent 3 years plus pushing the limits of the new legalities to verify it.

Even when I give it away I have to be careful.

snipe, i appreciate the effort and info in your posting. knowledge is power and i'm first in line to admit i don't know much :) just do what i can with what i'm given. we did the vac for dd when she was born and so far she's only had a mild cold twice now (15 mos). counting our blessings.

Snipe, if you ceased to be a distributer and became 'just another concerned person', would you then be free to comment on the product ? or am I being too simplistic? Sad to see something good being suppressed by industry and government because of profit margins. Good luck in whatever you are able to do.

Tir_Na_Nog I did not mean to sound rude it is just that I keep close tabs on this sort of thing and by and large they still do little in the way of control on RSV, there where over 50 cases of RSV reported in North Texas in the last 2 months. Unless they run a test for RSV the doctor doesn't even know they have it. You would think with small children they would test for it but usually not until it has progressed into something more serious.

I am glad that your dd is doing well Tir_Na_Nog but it still points to what I have been getting at, the RSV was not cured just lessened, would it not be preferable not to have it at all, including the colds? My other two grandkids that I gave the stuff to have not even had a cold in the last 18 months and they are not receiving the product at all its just that their immune systems are now that strong.

It was my youngest grandson Paxton who had RSV and spent 10 days strapped to a bed with an IV when he was 3 months old, I gave him the product after he got out and hasn't missed a beat since he is now 16 months.

Even if I were to cease as a distributor I have had a direct link to the company that still makes me unable to speak balvenie. Its just the way it is for now anyway.

Let me ask what might sound like a leading question... Are you 100% sure that everyone who has the same disease your grandson has will be cured by this medicine? Are you 100% sure that they will all get better?

Drug companies have to consider those instances where the medicine helps one affected patient and kills another. Try to consider what a drug commercial would sound like if they said, "For the treatment of ____. Ask your doctor about "Medicine Y". We promise a 30% success rate using our product, or your money back."

Main reason I'm a chemist by career that doesn't want to work for the pharmaceutical industry - I'd be scared every day that the one bazillionth drug I made that went through trials, made it to the drug store shelves, saved one life, and accidentally ended dozens, because the trials didn't consider enough well rounded test-patients. I couldn't handle the risk, even if it did save one life...

Well AngelSong there it is now isn't it. The one that Chase is on is mostly golden mushrooms and I always ask if someone is allergic to them. Chase by the way has CF which is genetic and has no cure, but he went from 6 plus breathing treatments per day, several trips to the ER a week and only being allowed to sit on the couch and do nothing awaiting death. Now he only takes a couple of steroids a day and is running, playing and growing like any other child. There is another little girl who was in the same shape and her parents put her on it with the same results as Chase.

All I would like to see is the medical profession to look at it no more no less.

As for Paxton they ran the test for the RS virus and he no longer carries it. They used to tell you out right that it was incurable but now they only elude to it as such, its that whole tricky lawyer thing.

Then there are the others that I have given it to and everyone of them had the same response to it, did I stick my neck out? yes I did. Was what they were trying working, not very well. I would rather it be in the hands of a physician but that doesn't seem likely to happen so I do what I can and hope for the best. I never turn my back if I think I can help, fear is not an option in my world. That don't mean I will do something stupid and get thrown in jail for what I know would be a losing battle, I just fight those I think I can win. Been to jail once that was enough. :)

Snipe can you DM me the link to the company plz? My father is a type 1, Agent Orange diabetic who never fully gained his lung capacity back after his quad bypass. Any type of cold or flu is dangerous for him as it stresses his body causing his sugar levels to swing wildly. Dad's not much into this type of thing but I'm pretty sure my DSM can get him to take it if she nags enough.

I sure don't have any other ideas, but it's wonderful to hear that he's having so much fun......

If you've told the company that manufactures it what you've used it for, and that it's helped, it should be up to them to advance any trial-testing. An allergy to mushrooms would not be the only consideration - genetic makeup, as well as possibly other illnesses or medical conditions, or other prescriptions, could interact & cause additional side effects.

You don't want one or two doctor's offices organizing trials - too small of a test range (statistics limited by geographical region, among other limitations). I wouldn't ask a health insurance company, or the media, for that matter. Instead, I'd pester the daylights out of the manufacturer. Put the guilt on them of the additional lives they might save...

I'm not thinking you would send yourself to jail - As a scientist, I always have to think about the outlyers. In this case, an "outlyer" would be a child that was made medically worse by the medicine, rather than better.

I understand what you are saying AngelSong and I have told the company about what it can do and one of their products was tested by a university, Texas Tech to be exact but with the new rulings from the FTC and the FDA the product that was tested had its results pulled. It has turned into an uneven playing field where it has become so difficult and expensive for companies of this type to get their products tested it is extremely hard if not out right impossible. The product tested was for the treatment of ADD and ADHD against Ritalin and was found to be just as effective without being addictive and no side effects.

The products produced by this company are natural supplements which according to US government statistics no one has ever died from supplements, do I believe this no of course not, if anyone abuses a substance of any kind its going to turn out bad. And yes always check with the doctor first before you start using anything which can interfere with medication that you may already be on.

A new trend in the medical profession that I have learned about in the last year or so is children under the age of 2 get no medications of any kind except in the most extreme cases due to the ineffectualness on children of this age but to just ride it out. They don't even recommend giving them Tylenol of anything else now, so I guess that you wait until they are so sick that they have to be admitted to the hospital now. This is the case with the young lady that I will be giving you the email address to with her daughter. She was told that the coughing and congestion would last 21 days before it started getting better. The baby was 3 months old, had difficulty breathing, didn't want to take her bottles and slept continuously. Got little rest due to constant coughing even when she slept, her color was bad. Some how I have a problem with this.

Now for the bad news, the company sent an email that the product I was using on the little ones who can not swallow a pill has been discontinued due to a lack of sales. :( I guess if you were to ask me I cannot believe that the pharmaceuticals are not at least aware of the possibility of something that exists that can boost the immune system without the use of chemicals that alter the human chemistry as well as the fact that it is dirt cheap to produce.

Enough of this rant so for those of you who wish to ask here is the young ladies email address.

beancha@gmail.com