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Bambi - I just don't tend to post very often (although, since I'm currently looking for work, I'm around a bit more often). My live-in boyfriend of two years is a CFer. If/When Mannatech puts out some CF info, I'll read it. I read everything I can. I'm not dismissing the possibility out of...

Ahhh, it is nice to have another scientist around who agrees with me. I've looked at the glycoscience website before, and was throughly unconvinced. Give me a double blind, placebo controlled study. Then we'll talk.

They should probably run a new sputun culture (since something must have prompted his going on IVs, and you should find out if there's a new bug causing the trouble), however... anything to do with microbiology is going to take some lab time to get results back. They will generally prescribe...

Have you looked into if your insurance has a mail order pharmacy? By switching over... The cost for Pancrease alone went from $100/month (stupid non-formulary bs) to $80 for 90 days. It's saving a ton of money on the meds Jeremy uses long term.

<blockquote>Quote<br><hr>If the Gov. wont pay for it and the people cant afford it the cost would have to go down.<hr></blockquote> Or heck, if people can't afford it - they'll die and we won't have to worry about it anymore. That's just lovely isn't it? You know... there's this funny...

The best way to determine what antibiotic is going to deal with what bacteria is to do a sensitivity screen. They do this routinely at the U of MN clinic - they culture the sputum sample, determine what bacteria strains are growing in it. They then test those bacteria against a panel of...

Water - go to your local camping store, and pick up a 5 gallon water bottle. This way, you know the water is clean and safe. Critters, not good. Maybe you should look into having someone up to clean the cabin before you use it. Animal droppings are unhealthy for everyone, healthy or CF...

I'm sure Mike will appreciate it. I think you should welcome him to it by waiting until he REALLY REALLY has to pee, and then leave the bathroom all CF fresh. Jeremy has done that to me before (not intentionally) - and damn... you HAVE to use the bathroom or explode. Plus, it's funny. -Michelle

RE:Help me out Cfers...and non Cfers.... Hmmm, my idea would be to explain what you have to do differently every day - just to feel "normal" - while it's not terrible sounding to YOU (since you do it everyday) someone who is healthy is going to be shocked (pills, Vest, nebs, inhalers, if you...

Looking young isn't a problem associated with just CFers. I'll tell a few amusing stories of my mom's. When I was about 10 (which made my mom 30) - I was with her buying wine in a grocery store in Montana. The clerk looked at the two of us, and asked if we were buying the wine for our...

Getting sick stinks! Whenever I'm sick - I send Jeremy downstairs to sleep on the futon. Plus - no kissing, etc. We also try to do lots of extra handwashing. Hopefully he's not going to get whatever nasty virus I have now - I have had the worst sore throat for days - I can't even imagine...

I think one of the things they are looking at is developing lab-usable lung tissue for use in drug testing - as we know... mice with CF genese express mostly digestive problems - so they aren't that great at testing things like Pulmozyme or Tobi.

Yep, my boyfriend has CF. I don't post all that often (I'm a lurker at heart). -Michelle

Anyone else participating in a clinical study at the moment? I ask because my boyfriend just started in one that is looking at using Diabetes therapy to improve muscle mass (and of course, lung function) in CFers with abnormal blood glucose but without fasting hyperglycemia (high blood sugar in...

Zach - of all the funny places to run into people you know. It's Michelle - my boyfriend is your wife's coworker. Good luck to the two of you!

Yes, we go to Fairview. As with all clinics -there are some people who are better than others. (we haven't seen all of the doctors in the clinics - so I'm just talking about the ones I think are exceptional). With the pediatric clinic - Dr. Warwick is amazing. Everyone I've talked to loves...

We mix it differently - with 4 mLs of sterile water, then nebulize it all (and do it 2x day).

My bf does the colistmethate nebs 2x day every other month. He never really seems to have trouble with it.

Find a clinic that has done CF-related cases before. This is a VERY costly venture, make sure you're going to be dealing with a group of specialists that know what's going on. Didn't your CF clinic refer you to a special group?

The boyfriend goes to the Minneapolis clinic. If the doctors had their way... am: Albuterol+Atrovent+Mucomyst (acetylcysteine) with Vest. Then Pulmozyme (since there's still Vest-time). Antibiotic (alternating Tobi and Colistmethate monthly) pm: Albuterol+Atrovent+Mucomyst with Vest...