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As usual, I missed a big help for general CF health, especially GI health: WALKING!!!!!. Yeah, it is so obvious, but don't knock it until you've tried it. When my bowels have been primed and I am getting nothing but gas, which for some, is a relief in itself, I will either walk, vacuum the...

I recently was remarking to my dentist that I think my teeth came in with cavities. What I was saying is I don’t have a tooth in my head that is all mine. For a time, my prognosis was living no more than a couple more years. As a result, fillings, not intending to be a long term solution were...

Others have carefully told you the best course for you. Specifically following Printer's carefully laid out steps. Finding the appropriate CF center, having a sweat test, which if you can't work up a good sweat right now, PM me and I will go over training your body to sweat right to be properly...

For CFers afflicted with GI presentations, usually they have constipation. CF screws with the bowel, both in motility and fecal plasticity. A healthy bowel re-absorbs about 92% of the water passing into the bowel. The sticky, as opposed to slippery mucus membrane stiffens the bowel, reducing its...

Could you possibly dealing with pancreatitis or even an acute pancreatic attack? Like heart attacks that present referred pain to the left shoulder and arm, the pancreas, and gall bladder refer pain to the back, both more or less between the shoulder blades. The gall bladder and pancreas...

See a family law attorney. You have at your hands, virtually any solution you want from court ordered and social service monitored participation in your son's medical maintainence, to taking sole custody and increased financial support. I have seen a pattern of court decisions where the non...

Adenocarcinoma, for those CFers who haven't put this on their watchlist, need to be proactive either through colonoscopy, or even frequent sigmoidoscopys. Although epithelial glands are a common target, any mucosal cell, especially genetically malfunctioning CF linings, throughout the body are...

I join the chorus of those recommending exercise. I am an old man of 62, old in CF terms. My late diagnosis at 51 left me especially vitiamin deficient and the worst consequence has been big time osteoporosis that has affected ever bone in my body, including my teeth. I have talked with several...

For those with the patience to read my lengthy posts have accurately deduced I am a professional geneticist doing CF research. I attend a few privately held conferences where works in process are presented and discussed. In short I am privy to a lot of unverified research. A number of these are...

I started with air filtration in the mid '70s by building a filter wall. I was attempting to mitigate ammonia fumes wafting from a small commercial blueprint machine. The machine had an adequate filter but volumes of fumes came from the finished prints making an entire floor of our office...

Havoc, Incomudrox, and those who may follow: I can't adequately express my feelings. But of course I'll try to anyway. The two of you feel like you're my kindred spirits. You posess wit, compassion and intellects I enjoy and admire. I am staying here, but I intend to join you at your new home as...

If it looks like a duck, walks like a duck and quacks, chances are it's a duck. A few weeks ago, two topics covered a lot on 'when it is CF or when it isnot CF', and M470V? Before genetic testing for CF, the sweat test was, and by all measures, still the gold standard for diagnosing CF. From...

I had been on Pancrease, and though I had to donate my right ear, I and our attorney along with some tap dancing by my CF specialist finally got insurance to go with scripts for two different strengths. My wife is big on keeping a log of my meds, meals and liquids and bowel habits. I do this...

A quick thought. Knowing only you live somewhere hot and sunny right now, I grew up in hot, arid high altitude blowing a hot dry wind. Poor thirst response, from what I understand is muted in CFers. Non CFers supposedly are already dehidrated when the thirst response kicks in so CFers are at an...

I wonder if the rash isn't Prickly Heat? When I used to get heat rash, an area, or sometimes my entire back or flank etc. developes hard pimple like, raspy hard bumps, like tiny plugged volcanoes, that itch like crazy. When I most often joined 15,000 close friends, on a cross Iowa (@ 500 miles)...

Lilmac7, I was introduced to colloidal silver over 20 years ago. My software engineer, Dan, had the same naturepathic, wholistic living endoctrination thirty years before that. Although we didn't know each other then, we learned and subcribed to a lifestyle undeniably healthier and exponentially...

In the words of the late Gilda Radner, "NEVER MIND". A small detail, in the CF world of acronyms Pseudomonas a. is properly Pa. My blinders were on when another genetic mutation family uses the acronym PA. Re-reading all the posts, nutrition issues dominated a lot of posts, and all references...

Try detoxifying with activated charcoal. Start low and increase it until you and your daughter are happy. Since she has made it to 6 before the disease was noticed and diagnosed as PA, I would say she is not totally insufficient. Her age would be normally very active. Activity recycles amino...

I imagine you are about at wits end. I refreshed my memory of just what PA is, also why and how it works. PA (propionic acidemia) is in a family of genetically perpetrated metabolic disorders called organic acid oxidation disorders. In particular, propionic acid is normally digested by the liver...

I imagine you are about at wits end. I refreshed my memory of just what PA is, also why and how it works. PA (propionic acidemia) is in a family of genetically perpetrated metabolic disorders called organic acid oxidation disorders. In particular, propionic acid is normally digested by the liver...