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  1. L

    Bacterial food web may be key to cystic fibrosis

    Epona, scarecrow, and anybody interested in mucoid and non mucoid P.a. Mucoid certainly sounds like mucus and thankfully scientific nomenclature still relies on the root language, Latin. Mucoid bacteria, was named so because it glistens when you observe colonies of it on the agar plate or on...
  2. L

    Bacterial food web may be key to cystic fibrosis

    Scarecrow, I will look into Lactoferrin and Xylitol per your request. It should be fun I don't know a thing about either one. Actually, I use Xylitol in my research but not in any way germane to breaking down biofilms. If credible articles are out there, I have subscriptions to a fair number of...
  3. L

    Flu after getting the vaccine

    Anybody so passionate about a public health issue of this importance needs to be very careful. Fortunately our enthusiast against vaccinations and inoculations is not enlisting anybody here. I don't like to hammer ideas or people but this threatens public health and the CF community. It...
  4. L

    Getting cut with opening Cayston

    I opened the link for vial crimpers offered by 2005CFmom and if the twist-off method works for Cayston, this tool grips the cap around the "band" of the metal cap just for splitting and twisting off the cap cover. Vial tops are standard, but considering this cap cuts, it might be wise to measure...
  5. L

    The type of bacteria growing in CF lungs correlates with how viscous the mucus is

    I find this study interesting and the data has potential value in diagnostics. Granted, as Printer points out the sputum sample will reveal the pathogens in the sputum. I could argue it will reveal only the pathogens in that sputum sample. Years back, these tests were not reliable because it is...
  6. L

    Does Kalydeco Eliminate Pseudemonas?

    I think everybody is on the same page. The question really is, ‘Will the new environment in my lungs and body, due to Kalydeco, allow the body/antibiotics to eradicate resistant microbial colonies?” It is a great question, in fact a fantastic question for the future of all CFers. The answer in...
  7. L

    lip cuts

    Yeast or candida is a good suspect. There is a prescription mouthwash that works great. Nystatin, oral medication is often prescribed for thrush, an overgrowth of candida on the tongue and ora mucosa. If it's attacking the lips, its all over the mouth too. Lips like toes are always almost wet or...
  8. L

    exercise video for 12 yr old boy

    Here's an oldy but a goody. "Go, You Chicken Fat, Go" was a Federally distributed fitness song under the Eisenhower and Kennedy administrations. If you have to look at something while exercising to the song, several UTube videos and such are free and downloadable. I remember the origanal LP...
  9. L

    how do I know how many enzymes to take?

    Good question. A lot of CFers taking enzymes wonder too. The Creon metric contributed by Calebf assumes no contribution of enzymes by the body or total PI. Even then it is a SWAG because people are just different; What fats are being digested? What other foods are consumed with the fats? And...
  10. L

    There must be a way to strengthen the immune system?

    To aid a child in developing a strong immune system they need to be exposed to germs and be given the best tools to naturally fight them. Generally speaking Sam or other young kids are developing their immunity right now, it is an ideal age. We aren’t born with very much immunity, but our...
  11. L

    Anyone feel lightheaded when sick?

    Cheerfulpuppies, My first thought was a sinus/ear infection but figured that would be your first thought and didn't want to insult your diagnostic abilities. The fact your mother is picking up on something you haven't could imply some delirium. Look for infections close to the brain, like ears...
  12. L

    Porcelain veneers

    Please post an update when your young smiler is veneered and hopefully delighted. As long as she's careful, her veneers may never have problems. This discussion is timeless, teeth aren't going to magically improve until genetic drugs stop errors in the salivary glands and malabsorption is...
  13. L

    Anyone feel lightheaded when sick?

    Are you dizzy or are you delirious? I obsess a little over the various chemical impacts on my conscious thought, but I see dizzy being an imbalance in oxygenation and delirious more an inability to focus for whatever reason. If your blood sugar and oxygenation are correct, maybe look at...
  14. L

    CF liver damage in a 10year old

    I was told to take milk thistle for liver toxicity. My liver isn't in bad shape like your little ones by any comparison so I would at least mention milk thistle to the doctor before giving it. Milk thistle isn’t overly powerful it is not harmful and does a decent job of liver detoxification...
  15. L

    Hyperthyroidism

    Can you say, Toxic (MNG) Multi-Nodular Goiter? For almost two years, I have had this sense of increasing toxicity. If I leaned toward the paranoid my suspicion would be somebody trying to poison me. A year ago July, I had a bizarre visit to the ER, nearly ending with me in restraints. The...
  16. L

    Port

    Anybody wishing to have a scar not contrasting to their natural skin is wise to use sun screen as soon as the doctor allows. I was told to do this for a month or two, so several weeks anyway. An easy cosmetic fix. LL
  17. L

    Porcelain veneers

    Rotten Teeth! I only found out CF = bad teeth a few years ago. Given the chance(s), to cosmetically fix my horrid teeth growing up, I would have found the money myself. The most durable dental work was a wholesale job involving a dozen or more fillings at a time. I was about 15 when my molars...
  18. L

    pulmonary edema

    I have had it in the form of altitude sickness. It can give a new meaning to being terrified! Usually a cardiac problem and/or pulmonary trauma precipitate pulmonary edema. Healthy people get it mountaineering and sky diving. It sounds like they are doing exactly what they should. First is to...
  19. L

    Rib Pain

    Ooh, that sounds painful! Last year I had what may be the same thing. They diagnosed me with pleural effusion, a first time for me. Not pleurisy, which is terribly painful, this is unlike any chest pain ever. Each cough, eh-hem, or tickle precipitated a body wide spasm of pain. I also was...
  20. L

    hiccups and throat

    Air in the esophagus gets trapped next to the pharynx and larynx. Gastritis or GERD often is the cause. Reflux of stomach gas caught in the throat hurts because of the unnatural contractions in the throat that is trapping the gas, the gas’s acidic nature and the pressure against surrounding...
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