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"The CF Foundation has previously invited Mannatech to submit a grant application so that a scientific clinical trial of glyconutrients in people with CF can be conducted. To date, Mannatech has not submitted an application. Therefore, the CF Foundation cannot responsibly recommend that...

"...know that if all the Christians are wrong (about Heaven, Jesus, Hell) then there is nothing lost from having faith in Christ and trying to live a loving and caring life style. But if Christians are right and there is a heaven and hell then the price for not trusting in God and his plan, is...

Dear Greg, I would agree with Julie and Debi. I kept a record of Jordan's cough level for quite a while when he was little (he's now 16), and he pretty consistently has more trouble when it's hot and humid. Jordan's cf doctor confimed that he had to admit more cf patients to the hospital in...

Hi Lindsay, My heart goes out to you. I still remember vividly being in almost exactly your situation. Our son, Jordan, was born with meconium ileus and had surgery at three days. Like Erin, he couldn't absorb much with the open stoma and kept losing weight, so he was put on TPN. The...

Hi Amy, What you're describing doesn't sound too serious. Many People with cf have "reactive airways", a condition where-- as in asthma-- the lungs over-react to irritation from environmental triggers. Colds are among the most common triggers. If that's what's happening, antibiotics won't...

Hi Sassy, Interesting question, -- but before I saw your post, I had never heard of Melaleuca or fructose compounding. Fructose compounding does not come up at all when you do a Medline search (covers all the journals available through the National Library of Medicine) or a Google Scholar...

Yes. If you have cf, you must have <u>two</u> mutated cf genes. Every child you have will inherit one of those genes from you and thus be a carrier, no matter who the mother is. If your girlfriend is not a carrier herself, then any children with her will be carriers only; that is, they will...

Hi Ethan Sky's mom, We live in Southern California, where it can get extremely dry in the winter months. We use a humidifier only when the humidity level goes below 30% for more than a day. Slant/Fin makes several models that heat the water to steaming and also kill bacteria with a UV lamp...

As I've indicated before, our bodies can easily convert the glucose from food into any other sugar needed for healthy functioning. The term "essential sugars" is inconsistent with standard biochemical usage. We refer to "essential amino acids" and "essential fatty acids" because these are...

Hi Chuck, Here is a nice quote for you from Francis Collines, co-discoverer of the cf gene and director of the National Genome Project. Note that it was published in 1992, before Pulmozyme, TOBI, Zithromax, or widespread availability of the Vest: "Survival has progressively improved over the...

P.S.: Have you tried weight training for putting on weight or hypertonic saline inhalation for lung function? Both seem a lot more promising than glyconutrients.

Hi Dave, You can read about others' varied experiences with these products by doing searches on this site using key words "glyconutrients", "Mannatech", or "ambrotose". Please be aware, however, that the president of Mannatech (apparently the primary source of these products) has been sued...

If you do a Medline search for "glyconutrients", you get exactly three entries, which is phenomenally low (usually you get hundreds or thousands for any general topic). Moreover, two of these articles are more than five years old, considered outdated for scientific studies. So if, indeed...

Please, please, please do not waste your money on "gluconutrients". They are essentially sugar pills, also known as placebos. I can find no reputable scientific studies to support the use of these products for any condition. Moreover, there's no theoretical reason why people could benefit...

We had a similar problem when Jordan was little. Bactrim is a sulfa drug, and it's not that unusual for people to develop allergies to sulfa meds. But you have to be exposed one or more times before an allergy can develop. We were forewarned, though, because there's a family history of this...

When you say "the cabin is not the cleanest place in the world (critters...)" , do you mean that you find animal droppings in it? If so, I would have concerns about adults staying there, much less a baby with cf. Healthy adults have been known to develop life-threatening illnesses after...

H. parainfluenzae is short for Hemophilus parainfluenzae and B. gladioli is Burkholderia gladioli, which is not the same as cepacia, though obviously related. I don't think there is any clear picture yet of what effect colonization by these bacteria might have on the long-term course of cf...

Yes, we did. Jordan started on the Vest when he was 11. His cough went up, just as Samantha's did, but within a month or so his small- airway measures improved and they remain high to date. But we also find he does best if we alternate the Vest with manual PT. Jordan says being upside down...

I agree. MRSA is just ordinary <u>Staphylococcus aureus</u> that happens to have developed resistance to several antibiotics, including methicillin. We all know that it is possible to get rid of plain staph, and there is no reason the same shouldn't hold true for MRSA -- unless it has become...

As a mom with a child who has CF, I also wish with all my heart that the research toward a cure could move much faster. But as a scientist trained in biochemistry and molecular genetics, I know how hard it is to translate basic genetic findings into practical treatments. I think the CF...