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That sooner cant get here quick enough. For us that have been at this for the last 40 years it is tough. I remember this path with dnase, PBA, Sciclone and the counless other non starters. YOu would hope that the latest research is built on the shoulders of the research in the past. How many of...

I think it is something that is a tough call. CF is treated under the ADA - BUT not telling is another matter. I know when i was younger I wanted to join the military. When the recruiting officer came to the house to talk to my parents my mother was like " really did you tell them about your...

I am curious about a few things that I can not find the answers to: 1. What do they (Pfizer) have in mind, do they have drugs in the pipeline? Do they have more potential. 2. What research has been done prior too? it seems they are both targeting the same platform. I know they are not looking at...

Has this been looked at by anyone, could be interesting. http://www.spp-sphingolipide.de/Publications/Riethmueller%20et%20al%20-%20Therapeutic%20Efficacy.pdf In summary, the present findings demonstrate the safety and the efficacy of treatment of CF patients with low doses of amitriptyline and...

thanks good info it would make sense to go forward with 770/809 because it works and maybe tehy can sell it in the interim - they have a lot of pressure from the cf community, then when 661 they can switch. But doesnt this newest deal with cff and pfizer throw cold water on vertex...

Bill most Cf's are lactose intolerant because we are everything intolerant. WIthout the right enzymes and assuming inflammation and poor intestinal health it is a wonder we get any nutrient. See my post below about dairy.

Dairy is mucogenic - meaning it makes mucus. Something we do not need. Dairy is mucogenic - meaning it makes mucus. Something we do not need. Actually the more tolerant you are of dairy then the more you are digesting and making more mucus. IT is a vicious circle with this damn disease Iknow...

Hi Ana: We met around 1995 at CFRI function one summer. Glad to see you here. Great job on the film. Rob

I had bad bowels for my entire life. I tried everything for years - acid blockers, enzymes, bi carb, had fecal fat tests, blood tests etc. I found out I had a sensitivity to gluten and went gluten free - 100% improvement - I had so much damage to my intestinal villi that no matter what the input...

He needs probiotics regardless The vest can make you feel yuck when you dont feel good. Maybe if he feels better you can go slower speed. He needs probiotics regardless. And Vit D Make sure you get the kids version and enterically coated. Also look at fermented foods like sour kraut

Rice Protein - There are a few options- Rice protein can be kinda grainy so FYI Futurebiotic is good - Jarrow is ok too Manitoba Harvest is good for the hemp protein ALso look at Egg white protein - Jay Robb is good

Coconut oil and coconut is full of calories and easy to digest!

Almond Milk Weight Gainer Smoothie - Got a picky kid that has lactose issues - try this super tasting recipe for lots of healthy whole food calories! 1 Cup Almond or Rice Milk ( 100 Calories) 1/4 - 1/2 Cup Almond Butter ( 200-400 calories) 1 Banana ( 70 -90 calories) 2 tbl Honey ( (100...

Sounds like a mouthful but has some great superfoods and anitoxidants in this awesome smoothie! 2 Bananas 1/2 Cup of frozen Acai 1/2 Cup Frozen Blueberries (other berries ok to add) 1/4 Cup Brazil Nuts (adds calories and smoothness) Lots of selenium- good for us CF'rs) 1/2 Cup Fruit Juice -...

sounds good do you ever try noni - beingi HA?

I like the red cabbage idea been looking at the issue of anthocyanins, bilberry can fight psesudo but now looking at othersPlants rich in anthocyanins are Vacciniumspecies, such as blueberry, cranberry,and bilberry; Rubus berries, including blackraspberry, red raspberry, and...

Good carbs LIjke any thing good carbs are real food. not processed food even though it is gluten free. ie gluten free cookies are gluten free but just sugar, corn starch and rice flour not real nutritious. here is a cookie i make that is just awesome and healthy sunflower raw cookies 1 cup raw...

G-Tube Advantage G-Tube Advantage “Let food be your medicine and Medicine be your food” Hippocrates For many years I looked at having to rely on a G-tube, to gain weight, as a negative thing. It seemed like a failure on my part for not gaining weight, laziness or just being overwhelmed with...

Yeah this is key - what kind of NAC do you take the PharmNAC? Yeah this is key - what kind of NAC do you take the PharmNAC?

When all else fails look to nutrition. I found that when I do A/B we get the rebound effect, you kill the bad bugs and the good ones too. 1. Nutritionally everything we are told is backwards - it is not quantity but quality. Look for some of my other posts here - g-tube advantage under rmotion...