News for gating, residual function and conductance mutations!

[samaruba]

Hello all,
With this post I'm hoping to reach patients with gating, residual function and conductance mutations. We have found a combination of two food supplements that have a synergistic effect on CFTR and can potentiate CFTR up to therapeutic levels (around 50%). This effect is backed up by 'in vitro' and 'ex vivo' (human intestinal CF cells) research. I have posted the news on several Facebook groups last week. Some people have started trying the combination and are already noticing effects…… (including some people that are already on K) I know some of you (like ourselves) are waiting for Kalydeco to be approved soon and some (maybe outside of the US but members of this forum) will not have access to Kalydeco for a while. My hope is that I can help some people stay as healthy as possible by sharing this information. Please check my blog, where I explain everything

dutchmagicfactory.blogspot.nl

Someone else who has also been trying the supplement combo with his sons, has put up a website which has loads of information, testimonials and research on it. The link to his site is on the blog as well. Enjoy!

If you have any questions, after reading the blog please do not hesitate to ask here of through a message on the blog.

Sam, mom of 7yr old son J with CF.

 

[triples15]

Wow, pretty interesting stuff Sam, thanks for posting!

I have S945L, a residual function mutation which was mentioned on your blog. I am definitely one of those that are anxiously awaiting Kalydeco. I would LOVE if this combo did anything to help in the meantime.

I was looking at ordering both supplements you mentioned but I see that is says you should not take Curcumin while breastfeeding. So I'm thinking I'll give it a try when we're done with that!

Thanks again for posting!

Autumn 32 w/CF

 

[samaruba]

I'm so glad you've found it! I know there must be so many people around that could benefit from this, but I just don't know how to reach them. There are more an more people trying this combo and so far each and every one notices effects withing 24 hours or so. I'm very excited and very optimistic!!! Some have used Dr's Best Phytosome Curcumin (Meriva), which also seems to work well. BCM-95 has worked and Longivida also. So if you can find that closer to home, it might be cheaper for you. There is also a US site called cncahealth that sells similar products as the ones I buy in Holland, also a good Genistein. Post a message on the blog when you are ready to give it a try. I'd love to hear from you! In the meantime, enjoy your little one!! How fantastic! You are mom with CF! So happy for you

 

[CyrilCrodius]

This is really old news. The avenue was shut down when they tried in vivo experiments and found out that there is so little curcumin that actually makes it to the cells that it's not worth it and that for it to be worth it, an impossible amount would have to be ingested. Curcumin is not bioavailable. It has trouble crossing the intestine wall. It might be another story if they manage to encapsulate it.

 

[samaruba]

Hi there CyrilCrodius. That's what I thought too. However, we've upped the dose of Curcumin and Genistein and his sweat test has gone down from 118 to 59mmol/L in February this year (2014). At the same time patients with double delF508 trying the supplements, notice improvements as well. So it's looking even better!
I know Curcumin's poor bioavailability is mentioned often, but it works. It really does!
The only way to lower a sweat test like that is through improving CFTR function…..

 

[bookworm]

An official study has taken place with Curcumin and Genistein in the Netherlands because of the success of Samaruba's son's sweat test (from 118 to 59 mmol/L. She was also asked to speak at a CF conference at the Netherlands. You can read about the study in the links below, as well as her speech at the conference, and a newspaper article about Sam and her son.

http://dutchmagicfactory.blogspot.nl/p/curcumin-genistein-trial-in-netherlands.html

http://dutchmagicfactory.blogspot.nl#sthash.snXEp9sE.dpuf

http://dutchmagicfactory.blogspot.nl/p/blog-page_14.html

 

[lrs2015]

Hello there. I'm new not sure what to say other than I'm an open book type of person and I wanna know everything about cf. From other parents others that have it. My daughter is 1 yr. Diagnosed at two weeks. When I found out researched the crap out of it and I still don't think I have my fill. I came across some articles and curcumin ( spelled wrong) but I wanna know more about any homeopathic things that you've done and have seen improvement.