Thanks for all the info!

[Guest guest]

I have tried Mucinex, but years ago. I will try it again....maybe I didn't try it long enough. I do the healthy diet, exercise and take a good probiotic.........try to do all the stuff to keep my immune system working well. Yrs. ago I used to rotate a bunch of lower level antibiotics but they all are not working now, only Levaquin has been working lately. But, I have not had to be on it as aften as these past months.

Would like to find out if anyone is using the vest, how long and how high the pressure? Does anyone have pain with their bronchiectasis?

Sharyn

To: bronchiectasis Sent: Wed, February 16, 2011 3:10:51 PMSubject: Re: good for lungs, digestion - NOT reflux!

Have you tried Mucinex? In high doses it's supposed to do a good job thinning the mucus. Also ask one of the people on this sight taking lots of natural foods and supplements to give you a list. Can't remember who it is, but she had a stellar list of things that have really made a difference in her health and bronch. Garlic, onions, turmeric, good unsweetened yogurt (add your own fruit), ginger, green tea, green and orange veggies, and several other foods really do up your immune function, which helps keep infections at bay. I would cut out trans fats and saturated fats (meat, full fat dairy) as much as you can. This will get your lipid levels where they should be and help your general heath a lot.

The other thing is exercise. Walk and do intervals of moderate jogging if you can, start with just a few blocks if need be. Lift hand weights (they're inexpensive) in front of your TV or take aerobics/strength classes. Classes are great to get you started on correct form in lifting weights and good form for other exercises. Pulmonary rehab is great if your exercise capacity is limited. The more exercise you can fit into your life, the better your lung function will be. You probably already know this, but just in case...

Good luck to you!

Kay Re: good for lungs, digestion - NOT reflux!

The test involved putting a small transmitter/monitor in my stomach - this was done endoscopically, using the kind of injected sedation that is used for colonoscopies. It was done in the ambulatory care center on an outpatient basis. I was officially "conscious", but have no memory of the procedure at all. I then was given a small receiver - similar to the kind used with Holter monitors. I wore it (or kept it on the table next to me) for 48 hours. I kept a diary of when I ate/slept/experienced reflux or heartburn etc. Then I returned the monitor and diary to my doctor - transmitter/monitor in my stomach passed and I was unaware of it - it's that small. This is called a ph monitoring test.If this test had been done when I first noticed a plummet of my oxygen SAT rate and increased shortness of breath, I would not have ended up with pseudomonas and more advanced bronchiectasis. I lost over a year of my life due to no one listening when I told

them that I suspected that it was the change in my acid reflux meds that had brought this on. I never thought to go to a gastroenterologist on my own - should have done so in hindsight. But then I didn't know I had bronchiectasis as I had never had a chest CT to diagnose it and all doctors thought my breathing problems were due to worsening asthma. When I look back, I realize that my asthma was very well controlled and had been for years. The doctors always did wonder why it was controlled (no attacks and visits to the ER unable to breath), yet my pulmonary function was never very good. That was the bronchiectasis! I'd had it for years! Sometimes I think I should have gone to med school just so I could make sure I was being properly treated. And yes, I live in a fairly large city and was seeing highly respected doctors, so it's not like I was seeing some backward, country doctor. One thing I have learned is that if ones doctor

can't identify and solve the problem in a couple of visits, one must go to a medical school and see the experts. Would that I had done this 18 months ago!Another thing I have learned is that bronchiectasis patients should see a pulmonologist who specializes in cystic fibrosis. The vast majority of those who have bronchiectasis, also have CF. In fact, all bronchiectasis patients, regardless of age, should be tested for CF to be sure they don't have it. Doctors are now finding CF in patients who are in their 60's - they didn't all die in their early teens as was thought for so many years. CF doctors simply have a lot more experience with bronchiectasis than regular pulmonologist who mainly deal with COPD due to smoking. It is NOT treated the same! The antibiotic protocol is totally different. I am about to undergo desensitization to Zithromax (I got hives when I took it many years ago). The standard protocol for antibiotic use in

bronchiectasis patients with pseudomonas colonization is to take Zithromax M-W-F for as long as it works, ie for many, many years. Inhaled Tobramycin would also work but most insurance companies will not pay for it unless there is a diagnosis of CF, and the IV form has a fairly significant risk of permanent bilateral hearing loss (I sure don't need THAT!). I've only known I had bronchiectasis since late March, but I've sure learned one heck of a lot about this disease. I've had to do so if I wanted to breath and have my life back!Suzanne