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My primary teeth rotted away often years before the adult teeth emerged. I wish I knew more about the why’s and wherefore’s about vulnerable teeth and CF but it is remarkable. A post some time back described CFers as being so typical that he could pick one out of a crowd. His description of...
In case you missed it, Printer was being sarcastic. Patient yes but like many CFers we necessarily have become experts. CF doctors in my experience start as pulmonary or GI specialists and as such a CF center with treatment inclined toward one specialty such as GI from the viewpoint of Cystic...
To attempt some payment for these eye opening payments I can contribute some toCF and the adrenals. Our bodies respond to stress of all sorts including injury and microbial attack. Pain initiates a cascade of events involving every body enhancing system. Like heavier breathing to elvate the...
Funny, I used to think joint/back and arthritic pain was just something I had. For a scientist, sometimes I wonder about my common sense. I have been on the edge of jumping out of my skin with body wide joint and bone pain since I was 20. At 20 I was hurt in a climbing accident resulting in a...
Juno, it looks like you are well armed to proceed. Read over the posts again including mine. A few things mentioned weren't in your summary. Repopulate your gut with probiotic bacteria and the probiotic yeast I listed. Yeasts and bacteria balance each other in the gut. A daily bacterial...
The conjoining of body and soul at birth is most often a memory we cannot recall throughout our lives. When our bodies wear out for whatever reason, our soul's remember and gently leave. This isn't some whacko idea or a cult narrative but a clarity of portence that has come from experience...
Everything suggested in the preceding posts are from people who have consistently given valuable and measured responses. Chances are good if you haven't a dedicated CF GI doc, you need one badly. Even at that I read your list of trials and tortures and don't need to look anything up since I have...
WOW!! So well said and the first response may include that miracle. Ok, what's really going on? Your immediate issue is recovery so just worry about that for now. Stuff you have no immediate resolution for or you can't control or change is beyond your control by definition so don't concern...
This may be a new issue that will require going essentially going on palliative levels of narcotics to manage pain. Acute pancreatitis which actually can become chronically acute could deliver pain beyond kidney stone quality for a very long time. Don't be concerned over too much pain medication...
An interesting study determined we age by domain as much as years itself. Nails age differently from eyes or skin. My nails got old fast thanks to fungus among us. Us CFers in particular get a nail bed fungus much like thrush because we sweat sweat sweat. I consider CF nail fungus a condition to...
Ooh yeah that "mild" crap sticks in my crop as well. As a disclaimer my knowledge of CF as a patient doesn't include anymore than personal experience, I haven't died at 4 nor am I sucking air through gifted lungs. I call it long suffering. If someone can iimagine 3 years of CF quality chronic...
Hi. At the risk of feeling baited, I can't resist encapsulating my life story. Printer laid out a killer timeline to provide perspective on the state of medical insight punctuated by sporadic breakthroughs. CF remains baffling to the average doctor and is not abundantly understood by any one...
Not again! Why, short of desperation, would a person ingest a heavy metal? For certain silver has been used as an antiseptic for a long time. Even silver based nasal sprays, throat spray and throat lozenges existed when I was a kid. I used them as if it were perfectly safe to do so. The real...
Just a note on CF mutations and apparently some data showing a general decline in health. At 30 something and still on your original lungs I would celebrate life and watch for a CF drug akin to Kalydeco for you. It is always helpful to compare notes with a particular CF mutation in common...
Gasp! The premise that you are alone with a wedge between diagnostic data and your baby's symptoms has been dashed. Is your baby's DF508 homozygous or heterozygous? Homozygous DF508 cinches a sadly positive diagnosis for CF although a single copy won't rule out symptoms of CF. The sweat test...
Welcome Ambry Genetics!
TomMonger, This year I repeated my genetic analysis from 2002 w/Ambry both times. The first test covered less than 300 just guessing whereas this test had ten times as many gene mutations. The results were the same and new data were included when describing my mutations...
Stopping Augmentin may be your only choice but beware of any other penicillin based antibiotic such as Augmentin for the usual reasons behind quitting any antibiotic early. I have often taken dicyclomine or the brand name Bentyl concomitant with antibiotics or anytime abdominal spasms become too...
Kyeev,
This info is killer. Holistic diets have and can be a wonder for good health. On the flip side this lifestyle requires a zeal to live this way. The mucus making milk anechdote precedes the internet by centuries. Gluten can cause difficulty in the first year of a baby's life. It is a...
Glutathione has potential throughout the body guiafenesine (Mucinex) causes the body to secrete more mucus. This assumes the fresh mucus is thin like thining honey with water. CF mucus is thick when freshly excreted. Granted it can only get more viscous as with all people. If fresh mucus is...
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