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Wed, Feb 6 10:08pm · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

I have read great things about Dr. Huitt and Dr. Kasperbauer both. Just wondered who you saw. They may not be taking new patients but the trip to Tyler is going to soon not be an option for us. We need direct flights! Can't describe the trouble we've had with layovers, reroutes, etc.

Wed, Feb 6 6:41am · New Diagnosis of MAC/MAI & I'm scared in MAC & Bronchiectasis

Tdrell: You have been such a help to me so far. I'm going to push it a little farther. I have been going to Tyler, Tx to Dr. David Griffith for eight years. I adore him and feel that my attitude of not having my life spoiled is solely due to him. However, the trip there has become such a hardship. No good way to fly- hours layover- and so terrible costly. We can fly straight to Denver from our hometown and I am seriously thinking of changing now that we're getting older and especially if Dr. Mitchell operates on me. Who is your doctor and are they taking new patients? Giving up Dr. Griffith will be huge for me!

Tue, Feb 5 6:34am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Tdrell….There is no way to thank you enough for directing me to that video. It has confirmed my position that I need to just get this done. Dr. Mitchell is obviously "brains on wheels" and has this surgery down to a fine science. I have no hesitation putting myself in his hands. The video confirmed it. So much info on there otherwise also. Again, thanks a million!!

Tue, Feb 5 6:27am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I have a terribly sensitive gut. Have trouble with most things other than Tylenol. Still stupified that I do so well on the meds. I started them a week apart both times which helps immensely. And again, if your doctor is willing to let you suffer with them and not keep tweeking, you have the wrong doctor. My doctor in Texas is invested in seeing that I have the best life possible at all times. When he tried a new med on me and it put me to bed, I called him and he said "Throw that damn stuff away. You can't be like this."

Sat, Feb 2 7:27pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Do not let yourself suffer from the meds. I could not take Rifabutin at all, but do beautifully with Rifampin which is the sister. Squawk if one of them is making you sick. They can change it out and they should or get a new doctor. My doctor in Tyler would never have let me suffer or be in bed from the drugs. I read where these poor patients spent a year on the couch. Ridiculous and not necessary.

Sat, Feb 2 1:22pm · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

I am 68. First round when I was 60 and 61. Second round at 66 and 67. We are all different when it comes to the meds, heaven knows. I have been lucky with no lasting effects. They also convert me to negative right away. But the MAI keeps coming back. At 68 there are things I am willling to do and things I am not. I will not lose my eyesight or hearing for this disease. I will also not spend half my time on a picc line. I never wanted to live to be old, old. I am not adjusting well to old age and always knew I wouldn't. I don't outwardly exhibit that, but my happy act is just that- an act. I think my dr. at Tyler, TX will send me to Dr. Mitchell for surgery this time. I am willing to do that with a few months of meds before and after. If that will give me 8 or 9 more good years I am content. If I have to lose my hearing to do that, I refuse to live those years in isolation and a complete nuisance to everyone. We all are masters of our bodies, not the doctors. My doc and I each know our limits and work together. I have post polio syndrome- possibly why I have MAC- so my legs are getting worn out. I am not fit at all. You are lucky you can really exercise. But I am like you. Keep thinking a new treatment will come out after all these years. Research seems pitiful.

Sat, Feb 2 8:43am · (MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS in MAC & Bronchiectasis

Hi Bev: I have been dealing with MAC/MAI for 8 years. Did the meds for 18 months two different times. I am an expert on taking the drugs by now. Going on them again. I have very few symptoms with my disease luckily except for fatigue. Here is my humble advise. When I went to the drugstore and first bought all those pills it was scary. I lined them up on my island and thought- okay guys, we're in this together and we're going to knock this thing. Attitude is everything I believe. I also gleaned advice off of these sites and it worked. I took Acidopholus probiotic everyday that I ordered online (patients swear by it) and a vaginal probiotic to prevent yeast. These drugs kill the good, bad and ugly. Your good bacteria need replacing. Always eat something in the morning before pills. If you go into this stressed, it will add to the side effects. Go into it determined!! The endorphins will mitigate it. I have had a happy life with MAC- travel, built at house, moved to another city, and still cook for all the holidays. Good luck!