(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@nick52, I believe you that it works. I have my old stand-by too. I drink 'Breathe Easy Tea' by 'Traditional Medicines' found at some grocery stores like Kroger and Fry's. Whenever my chest feel very tight, it opens my airways. Also, calms a cough. I haven't had to drink it the past year because my lungs have cleared up totally after I was treated for pseudomonas.

@windwalker Hi Terri, welcome back and glad to know that you were OK during the hurricane. Good suggestion about using the nebulizer. I have an appointment to see my pulmonary doctor on Oct. 5. Will inquire about that. I'm also seriously considering giving Clear Lung a try as @nick52 has suggested. Thanks for asking, Terri. I'm doing great. Just came back from a 8-day trip to the Grand Teton National Park and did some hiking there when the weather was suitable. The longest I did was about 14 miles with an elevation gain of over 4,000 feet. Had to trudge through some snow that had fallen on top of the mountain the night before. Not bad for someone with lung issues. Never had breathing problems during the hikes. But my feet and leg muscles were a different story.

@jkiemen, I went to the conference in D.C. last spring. It was put on by NTM Info & Research. They are trying to get more funding for research. At the moment, mac/bronchiecstasis is considered an 'orphan disease' because the reported numbers of us are low. NTM is the only ones I know of right now trying to put together a data-base of those of us who have it. They asked at the seminar that the patients who attended please sign up on their registry. They need real numbers to show when they apply for grant money to do the research. I have signed in myself. You can visit their website at http://www.ntminfo.org to learn more about it. They also have a support group at http://www.BronchandNTM360social.org I signed onto that also, but did not find the community there as helpful and supportive as this one. It may have changed since I last looked at it though. I also think that it is not going to be an 'orphan disease' for long either as more and more people are getting this. Even healthy people are catching mac. I would suggest going to your municipal water company and ask for the REAL water test results at their facility, not the simple ones they post on their websites. I plan to go to ours in person because they have not returned my e-mails. WE MUST ALL BECOME ADVOCATES! Contact the CDC and complain and demand answers. I have called them several times in the past, they are good about communication.

@nick52, I did a food elimination test on myself about 15 years ago and narrowed down which foods aggravated my lungs. I found that gluten and sugar were the biggest culprits. Food dyes also messed me up. Yellow and blue were the worst, for example: I cannot drink a Mountain Dew or I will cough incessantly from the yellow dye. I cannot eat Peanut M&M's except the brown ones or I will cough my head off. I have been on a whole foods diet ever since and do so much better.

@jkiemen I used to have the mucous at the back of my throat, in fact, since the age of 13; I am 58 now. a lot of it went away when I eliminated certain things from my diet. I was treated last year for pseudomonas with tobramycin and and all of that drip and phlegm went away. I still have a little post nasal drip from time to time. I found that doing a Netti rince with distilled water with added salt clears that up pretty well.

@128128terry11t, I too am wondering if @suttonmac2009 has ever tested negative after on the meds 7 yrs also.

@joan912 You have an excellent medical center in San Francisco at the University. They are also #1 in the nation for lung transplant survivals. Mayo used to be #1, but lowered because they take even the most desperate of patients. CT scans are very strong and it is not recommended to have one but every two yrs (I think). They can do damage to your DNA. That is one reason they are frowning on him having another one. You can have that CT scan transferred to a different doctor, even if it is to a different institution or clinic. Then it can be read by a different set of eyes. There is another member on our forum who saw a very GOOD pulmonologist there at the University. I will look back on her thread and find the name of her doctor and share her @ with you so that you can converse with her about her experience. - Terri

@sophie1019 So glad to hear that you are feeling good Sophie!

@nick52, These are not stupid questions. I think many of us have the 'tree-in-bud' thing going on. My pulmonologist at the Mayo was SHOCKED to hear how many people are put on the BIG 3 meds. He thinks the same as your doctor, to medicate at the first sign of MAC is over-kill. I was diagnosed in 2005 and have not taken the BIG 3, I have taken two antibiotics on alternating months, and that seems to keep the infection away.

@irene5, although my dr agrees with nick52's dr, I still wonder if I shouldn't have gone on the BIG 3 in 2005 when I was first diagnosed? That dr at the time wanted me to, but two other pulmonologists said they would not recommend it. I sometimes think of getting another opinion from a diff medical institution, but I think one could get differing opinions on treatment everywhere. That is the maddening thing about this.