hi guys-
So, I am on this other board as well and there is a lot of talk of this supplemnt called mucolyxir. It is a sublingual supplement made from DNA from wild salmon. Lots of the parents on that board swear by it and I was just wondering about it. I have always thought they were a little nuts because it had fish DNA in it for pete's sake .....of course, it has been pointed out that Pulmozyme is made from hamster DNA so....what's so bad about fish???
I had my doubts about it because if you google it there are some anecdotal stories about older cf twins who had remarkable results from trying it. This was back in the early 90's and they supposedly gained so much weight they bought all new clothes and their pft's increased by 30%.....I call BS!!! Apparently what this supplement does is mediate the inflammation, increase cilia function, hydrate lungs and thin out secretions. Another anecdotal story is about a child in New Zealand whose daughter experienced remarkable results...her daughter was literally coughing up chunks of mucus only days after beginning the mucolyxr.
Now, if you look on the cff.org pge, they say that there is no clinical evidence to support use of mucolyxir in cf. Not that that matters to me because they didn't support Glutathione early on either. but stiil..
Ok, so I start researching this stuff because I am intrigued. I never really been able to get up mucus and I am always looking for something to help me.
Yesterday, I spoke with one of the clinical nurses in South Carolina who treated the cf twins. She said that they both were very sick to begin with....in the early 1990's and they were in their 30's. She said is was remarkable the change in them. They continued to do well for years and had a great quality of life. One has since died but the other is doing great.
I am waiting to talk to one of the inventors Allen Lieberman on Monday....But, in the mean time TODAY I spoke with the other inventor JOHN MCMICHAEL PHD.
OK, this is very exciting. I told him who I was and that I read an article he wrote in 2006 about mucolyxir and recent cf clinical trial. I said I have been hearing anecdotal evidence about the benefits...
He corrected me and said that it is NOT anecdotal evidence. They have just finished an FDA phase II clinical trial and the results have been amazing in not only cf, but copd, asthma...
He finished by saying that the more advanced sometimes experienced the most movement because there is so much damage and plugging.
He said the safety profile is excellent and they have had NO side effects...none. I said I was concerned about the DNA from fish and he said there is no gene transfer or anything like this...it simply mediates the immune response much like allergy shots. He also said after this last trial they tried all different formulations from synthetic DNA, cow DNA etc and they all had the EXACT same effect.
he told me the protocal the used in the clinical studies and I will begin as soon as it gets here.
I am including one quick little blurb that got me interested in researching it and also the link to the latest studies. This link is a link to a journal. You have to scroll down through the mag to get through to the article entitled "Microdose DNA for the treatment of Acute Respiratory...."
Cut and paste this and put it in your browser
www.ana-jana.org/members/journals/JANAVol_91.pdf
Here's more info:
This from Sofia's family:
The Mucolyxir is a natural
DNA substance and is a natural alternative to DNase (otherwise known as Pulmozyme)
It is a liquid and used as drops under the tongue. It is a product that has absolutely no side effects, but if the patient has much mucus, you must start slowly because it will quickly break it down and the patient may get to "juicy" and overcome with the amount of mucus being broken down. Luckily Sofia had no problems with that - we started her on one drop twice daily on a clean mouth under the tongue and now she takes 3 drops 2 x daily.
Mucolyxir can be purchased on line at Advantage Nutrition.com - cost is $2l.00 per bottle. I do suggest however that you get a dropper bottle at the health food store and transfer it from their packaged bottle because their dropper method is too difficult in my opinion and I am giving Sofia the drops in the AM and after school on the run so it is easier to do it with a regular dropper.
I think I sent you the information on Mucolyxir (the paper written by Dr. B) if not, or if you cannot locate it, give me your address again and I'll send you another
any other questions, let me know. We did do one thing with Sofia that I am glad we did. We began testing her twice daily with a person peak flow meter before we started the Mucolyxir - and then each day thereafter, and so it was quite evident and dramatic when her peak flow increased from 50-75 to 220-250in a week.
let me know if you have any other questions or keep me up to date if you use it
best to you
OK, that is all I have.....I will say that when I Spoke with John McMichael today I suddenly got really excited. i know it is a little far-fetched, but hey, who knows??
Mandy
So, I am on this other board as well and there is a lot of talk of this supplemnt called mucolyxir. It is a sublingual supplement made from DNA from wild salmon. Lots of the parents on that board swear by it and I was just wondering about it. I have always thought they were a little nuts because it had fish DNA in it for pete's sake .....of course, it has been pointed out that Pulmozyme is made from hamster DNA so....what's so bad about fish???
I had my doubts about it because if you google it there are some anecdotal stories about older cf twins who had remarkable results from trying it. This was back in the early 90's and they supposedly gained so much weight they bought all new clothes and their pft's increased by 30%.....I call BS!!! Apparently what this supplement does is mediate the inflammation, increase cilia function, hydrate lungs and thin out secretions. Another anecdotal story is about a child in New Zealand whose daughter experienced remarkable results...her daughter was literally coughing up chunks of mucus only days after beginning the mucolyxr.
Now, if you look on the cff.org pge, they say that there is no clinical evidence to support use of mucolyxir in cf. Not that that matters to me because they didn't support Glutathione early on either. but stiil..
Ok, so I start researching this stuff because I am intrigued. I never really been able to get up mucus and I am always looking for something to help me.
Yesterday, I spoke with one of the clinical nurses in South Carolina who treated the cf twins. She said that they both were very sick to begin with....in the early 1990's and they were in their 30's. She said is was remarkable the change in them. They continued to do well for years and had a great quality of life. One has since died but the other is doing great.
I am waiting to talk to one of the inventors Allen Lieberman on Monday....But, in the mean time TODAY I spoke with the other inventor JOHN MCMICHAEL PHD.
OK, this is very exciting. I told him who I was and that I read an article he wrote in 2006 about mucolyxir and recent cf clinical trial. I said I have been hearing anecdotal evidence about the benefits...
He corrected me and said that it is NOT anecdotal evidence. They have just finished an FDA phase II clinical trial and the results have been amazing in not only cf, but copd, asthma...
He finished by saying that the more advanced sometimes experienced the most movement because there is so much damage and plugging.
He said the safety profile is excellent and they have had NO side effects...none. I said I was concerned about the DNA from fish and he said there is no gene transfer or anything like this...it simply mediates the immune response much like allergy shots. He also said after this last trial they tried all different formulations from synthetic DNA, cow DNA etc and they all had the EXACT same effect.
he told me the protocal the used in the clinical studies and I will begin as soon as it gets here.
I am including one quick little blurb that got me interested in researching it and also the link to the latest studies. This link is a link to a journal. You have to scroll down through the mag to get through to the article entitled "Microdose DNA for the treatment of Acute Respiratory...."
Cut and paste this and put it in your browser
www.ana-jana.org/members/journals/JANAVol_91.pdf
Here's more info:
This from Sofia's family:
The Mucolyxir is a natural
DNA substance and is a natural alternative to DNase (otherwise known as Pulmozyme)
It is a liquid and used as drops under the tongue. It is a product that has absolutely no side effects, but if the patient has much mucus, you must start slowly because it will quickly break it down and the patient may get to "juicy" and overcome with the amount of mucus being broken down. Luckily Sofia had no problems with that - we started her on one drop twice daily on a clean mouth under the tongue and now she takes 3 drops 2 x daily.
Mucolyxir can be purchased on line at Advantage Nutrition.com - cost is $2l.00 per bottle. I do suggest however that you get a dropper bottle at the health food store and transfer it from their packaged bottle because their dropper method is too difficult in my opinion and I am giving Sofia the drops in the AM and after school on the run so it is easier to do it with a regular dropper.
I think I sent you the information on Mucolyxir (the paper written by Dr. B) if not, or if you cannot locate it, give me your address again and I'll send you another
any other questions, let me know. We did do one thing with Sofia that I am glad we did. We began testing her twice daily with a person peak flow meter before we started the Mucolyxir - and then each day thereafter, and so it was quite evident and dramatic when her peak flow increased from 50-75 to 220-250in a week.
let me know if you have any other questions or keep me up to date if you use it
best to you
OK, that is all I have.....I will say that when I Spoke with John McMichael today I suddenly got really excited. i know it is a little far-fetched, but hey, who knows??
Mandy