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


Edited: 04/29/2007 at 01:27 AM by dramamama

Great information. I was just about to embark on my own investigation of this product, so thank you for sharing your research thus far. I am going to read more as well...can the Dr.'s who did the study provide it to us or is it still in progress?

Sofia's story is quite amazing...I think her parents are very scientific about everything they try; they test before and after and document their observations.

Thank you again...this is very interesting.

-------------------------
Jody

www.cfnutrition4life.com

Bump

-------------------------
Joanna, wife, student & mum to four and soon to be Nanny, ages:30 wcf, 28 wcf and expecting her first child in May, 13wcf & type 1 Diabetes (G551D & DF508) & 11 wo/cf (carrier status unknown).

Foody-
the link works now.

Hey Mandy,

I remember reading about mucolyxir once or twice...and i kinda just shrugged it off as BS. I was also interested in trying a bunch of other supplements, so i didn't wanna go overboard at the moment.

Anyways...I've been working a lot lately and decided to try a couple of other supplements this month...Mainly high doses of R lipoic acid, and increasing ones of EPA and Coq10. So i was ordering stuff and was doing a bit more research when i found the mucolyxir again. It was only 20 bucks, and I said what the hell, I'll order it and give it a shot. If it works it works, ok great, and if doesn't I figure it won't really harm me...so why not try.

I am still waiting for the package, so hopefully when i get it in the next few days, I'll give it a shot and let you know what I think...

I also ordered something called Seaprose after reading a product called Mucostop. It is made by Enzymedica...and it said it is a combination of various enzymes that help break down mucus.

I was reading down the list and saw seaprose...and saw that there had been some studies done. If you pubmed Seaprose, you will see numerous studies documenting it's positive effects on increasing viscosity, as well as an interesting artical about its positive effects when mixed with eurthromycin. I figure it is in the same class as zithro, so maybe it will increase the effectiveness of it as well.

Anyways, just thought i would let you know that I am going to try it soon along with the seaprose, and let you know what i think. I'll start with the mucolyxir first...

Kiel

-------------------------
I won't always live in my regrets.

Since it comes from fish does anyone know or have read anythign regarding the mercury content? I might try this if there is information on this.

-------------------------
Nicole
29wCF P67L E60X DX@21yo
ABPA, bronchiectasis, gallbladder removed, 100%FEV1, pancreatic sufficient, XOLAIR ADVOCATE
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
http://cftoo.blogspot.com/

This sounds more promising than much of the research I have read. I am very intrigued.

Thanks for posting. I also saw something about this on that glutathione board.

I hope some of you who have tried this let us know how it goes. I'm currently trying glutathione for the first time (pills). I may try this mucolyxir pretty soon though.

Edited: 04/29/2007 at 07:33 PM by jfarel

This has my curiosity up also.......... I hope after you guys do try it, you will give us a progress report. I am very interested to see if it works well.

-------------------------
~ Diane 44 / cf / diabetes / b.cepacia

Hi all-
The mucolyxir came and I have started it according to what the directions say.

It has a slightly salty taste and water consistency with perhaps a little oiliness...but not in a gross way[IMG][/IMG]

I will let you all know about my progress in my new supplement trial.

PS If you plan on trying it, you should buy a dropper because the dropper on the bottle is not very good.

Edited: 04/30/2007 at 08:23 PM by dramamama

Great! Thanks look forward to hearing from you!

By the way, do mind telling us your fev1 to start with. As well as your age and BMI. Just think that might be helpful.

Hi.
Okay my fev1 is 51% and has been for a few months...
my BMI is 16.8...I am 5'5" at 101. I am VERY small boned as is my whole family so I am not as under-weight as I seem from my BMI.. I would like to see my weight go to 106 to 110.
34 female cf/cfrd


Quick note on he mucolyxir. My mouth is always dry like Sahara except when I am following an anti-inflammatory diet with zero cheating. Last night and this morning my mouth is soooo nice and moist!!!! I love this feeling.....and my nose is running a little. Not like a cold or allergies, it just feels moist too. And my nose feels really open. Last night when I went to bed I kept having to spit out drainage from my nose. I rinse my sinuses every night with neil-med saline flush and I get stuff out during the rinse but that is all. Last night I had gross dark drainage.....
and, everything tastes salty. Now the product has a little salty flavor, but would that salty flavor continue for the whole hour after I take it? Who knows?

As you all know I can't inhale hypertonic saline, so I can't move stuff out normally and I hardly ever bring stuff up.

Edited: 05/01/2007 at 10:14 AM by dramamama

Sounds like a good start. Thanks.

Thanks for the update .......... PLease Keep us posted

-------------------------
~ Diane 44 / cf / diabetes / b.cepacia

I am very impressed and happy for you all. I just called a friend who has CF and told her to come check out this post.

Thank you Mandi once again for providing us all with wonderful info

found this link that looks interesting. I could never take it because it boosts the immune response.
http://www.springboard4health....ore_arg_mucolyxir.html

-------------------------
Risa




TransplantBuddies.org

48

"The soul becomes dyed with the color of its thoughts."
Marcus Aurelius Antonius

Edited: 05/02/2007 at 09:47 AM by EnergyGal

Hi.
Been doing the mucilyxir for 2 days and am starting to develop a really deep rumbling cough. Mine is normally dry and hacky.....

I am getting gross stuff out of my sinuses down the back of my throat.

Today I feel not so great so we shall see what is going on here.

Hopefully, just moving a stuff around.
m

Sounds like you are moving in the right direction.

Thank you for the update. I am very interested to hear the results.

I hope it works great for you

-------------------------
Mum to my gorgeous girl Kj, 17 w/cf newly engaged and mum to a lil baby girl.

Wow, this sounds really good...hope it works out like they say it does.

-------------------------
24 M w/CF.......thats about it.

I was just curious, do you curently use Dornase? We are also interested in tryinng this with our young daughter. I would appreciate any information.Tiffany

Hi everyone! My mucolyxir just arrived today and I have started to take it. I will post how it is going. Hopefully I will have some good results like Mandy has. Becki

-------------------------
Becki---34 year old w/cf

II Timothy 2:15