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@sandysupermom

HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with MAC and Bronchiectasis. She lives in Ocala, FL and we are trying to decide where to take her for further care. Her current pulmonologist wants to refer her to the University of Florida - Shands Hospital because they have a micobacterial clinic there. I have been reading the reviews from previous patients and their biggest complaint is the lack of communication between doctors. That's a pretty big flag for me. I wonder if anyone could tell me their experiences with Mayo. If you need a Pulmonologist and and Infectious Disease doctor and a Rheumatologist do the doctors work together? I should also mention that we are considering going to the Mayo Clinic in Jacksonville, FL

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Replies to "HI. I'm new to this discussion group. My 73 year old mom was recently diagnosed with..."

Yes I would like to compare how you are being treated with the treatment I'm receiving. Thanks.

@jengelage No problem, I am happy to share. My doctor does not believe in treating mac with the BIG 3 antibiotics. He said it is 'Old School' treatment. He reserves that plan for the severely& repeatedly infected. My treatment plan has been alternating months, 10 days each month. Ten days on doxycycline and the following month, 10 days on ciprofloxacin. 2 x a day for both. He said that patients that have both brochiectasis and mac need to be on a maintenance of alternating antibiotics as a prophalxis. He said, at least in my case, that I will always be at risk for re-infection. He does feel like the Big 3 antibiotic cocktail is overkill and can be toxic. Now, doctors tend to differ on this. At this point, there is no definitive at what is best. I never went on the big 3, and I test negative now. This would be a good discussion to have with a Mayo doctor. I have found from experience that most private practice doctors are not really up to date with knowledge about this disease. I hope this helps. Please, if you don't mind, keep us in the loop and share what you've learned. Will you be seeing a Mayo dr soon?

So are you saying windwalker that cipro and doxycycline cured you of MAC, and that is why you are on them prophylactically? If that is what you are saying, I am extremely interested because the Big 3 is/are so very toxic for me. Thank you. Irene

Thank you for your response. I have a similar diagnosis, but so far am being treated with nebulizer with a salt solution. Interesting to the different approaches to the same diagnosis. The Big 3 treatment effects seem to be worse than the disease as long as the person is not experiencing severe symptons.

@irene5 Yes, Irene, that is what I am saying; although we are never really 'cured'. We are suseptible to getting it and will likely get it again some day. I have been on this regimen simce 2013. It does work for me, but just know, what works for one person may not work for others. Everyone with mac needs to get a suseptibilty test done on their sputem samples.

@jengelage Hi. I am glad to know that you are doing the nebulized saline, I do that too. It does make a big difference in keeping our lungs clean. Are you doing it twice a day?

@irene5 A doctor tried to put me on the Big 3 in 2005, but I refused them because of the toxicity. I was treated with zithromax for several weeks and I got better for a time. Better, mind you, not cured. I stayed sick from that point until 2013. During those years, I was like someone with emphysema. I had good days and bad days and very bad weeks. It wasn't until the doxy/cipro treatment that it cleared out. While on it, I did catch pseudomas. That was treated with tobramycin for 6 alternating months. It was alternated with cipro. For some reason, that seemed to be MY magic bullet. All coughing ceased after that. I emphasized 'MY' because Katherine tried it and she said she had a bad reaction to the toby. But, at that point she was already fully consumed with klebsiella, and serratia marcescens (hospital borne pneumonia type bacterias). You can ask your doctor about the regimen I am on and have your next sputem test tested for suseptability to doxy and cipro. Some members have stated that their drs do not approve of my doctor's method. I think it could be for several reasons. One, they don't know about it, or Two, doctors just have differing opinions how to treat this allusive disease. It is worth a discussion with your dr at least. This method comes from my Mayo pulmonplogist. Mayo doctors are cutting edge and worldwide respected. Plus, I am proof that other methods work. I would be intetested in knowing what your dr thinks.

Yes, 2X a day. No meds right now.

@jengelage I feel like that is the one of the best things we can be doing for ourselves.