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Mac + lung cavity

MAC & Bronchiectasis | Last Active: Mar 3 9:50pm | Replies (128)

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My Dr.s do not want to treat the MAC. They say it's very hard to get rid of and the antibiotics would be very hard on me. But when I have a flare-up I feel pretty bad, go on Augmentin or something like it. I feel better for a while but it always comes back. Do you think a trip to Mayo Clinic would help me or be worth the try? At this point, I am not sure. Thank you for reading, hope to hear back from you, Jan

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Replies to "My Dr.s do not want to treat the MAC. They say it's very hard to get..."

Jan, I don't have MAC; I have a different bacterial infection. That being said, I do recommend the Mayo Clinic. After a year of unsuccessful efforts by other doctors to correctly diagnose and treat my condition, that all changed when I was able to see both a pulmonary specialist and an infectious disease specialist at Mayo. Still working on my condition -- I'm miserable at times -- but at least I feel I'm on the right track.

I would be on the phone immediately to contact Mayo or National Jewish for an appt. Your doctor is correct, MAC is hard to get rid of and yes the antibiotic can be very hard on you. That said, it took me over a year of going to different doctors (primary, GI, ENT and local pulmonary doc) and even paying out of pocket to get a CT of my chest to see what was going on in my body. The pulmonary doc did a bronchoscopy and I got the diagnosis of bronchiectasis, MAC and Pseudomonas. He hit me with the 3 heavy antibiotics and I felt I was slowly dying. I found this group and a member sent me the name and info on a doctor 3 1/2 hrs away. I contacted his office and with was able to get an appt. within a couple of weeks. My next option would have been Mayo--either Rochester, MN or Jacksonville, FL. The doctor I saw finally said I probably should never have been put on medication. He also started me nebulizing--that day. I had to undergo some IV antibiotic treatment for a tough (3 strains) of Pseudomonas. It still flares it's nasty head and I'm currently positive but only one strain. I asked if I could increase my nebulizing from 3% Sodium Chloride to 7% and he accommodated my request. Currently I'm not on any medication but do nebulizing once a day. I feel well and do what I can to stay that way. Thank you God the Father.

How long have you been diagnosed? What is the qualification of your doctor--is he a specialist? I learned a long time ago that knowledge is power. Your reaching out to this group is probably the best thing you could do. Everyone here is ready and willing to help you with questions you have. Now, get busy and find your super hero doctor. They're out there.

Pray God will be with you in your endeavours.

@janrn1 If you are interested in inquiring about an appointment at Mayo Clinic, you'll find more information and contact information of all 3 campuses on this webpage http://mayocl.in/1mtmR63.

If you have frequent flares I would certainly suggest a Mayo or NJH consult, whichever is more convenient for you. It is somewhat usual to not treat MAC if you are not symptomatic but that doesn't seem to describe you.