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Posts (216)

Mon, Sep 2 12:12pm · In shock after MAC diagnosis in MAC & Bronchiectasis

Jennifer — thank you for the post — please report back after your second opinion

Sun, Sep 1 11:47am · In shock after MAC diagnosis in MAC & Bronchiectasis

Jennifer@megan123 Thanks so very much for your post. Would you be so kind as to follow up after your second opinion. Jan

Sun, Sep 1 7:32am · In shock after MAC diagnosis in MAC & Bronchiectasis

janovr — thank you for your info

Sat, Aug 31 10:52pm · In shock after MAC diagnosis in MAC & Bronchiectasis

sueinmn — I read with much interest the fact that toby did not help you. I'm half way through my 5th session of toby and I sometimes think I cough more than I did before I started it. Maybe not, but tremendous coughing and heavy green phlegm It does not seem to be helping me at all. I just did a sputum sample and sure enough — pseudomonas as usual. I took Levaquin about a year ago — and clindamycin prior to that. None of those have helped. I hate to be a constant complainer, but was interested in Colistin. I have the list of susceptibility results and they are aztreonam, celepime, cefazidime, ciprofloxacin, imipenem, levofloxacin, and piperacillin/tazoactam. Has anyone on this forum not been helped by toby — and found any of the above meds to eradicate the pseudomonas. I would love to know what others have found. I need help (I'm with Rochester Mayo's and I've faxed my report to them so hopefully he'll try something else. I know Terri has used toby and another antibiotic on alternate months and I'm wondering if anyone else is on a program like hers. Thanks for all the info I can gather. Jan

Fri, Aug 23 8:10pm · MRSA was found in my sputum in MAC & Bronchiectasis

sylvermoon8…… Hi — I'm Jan and I just wanted to say MRSA was the first bacteria I was treated for. Levofloxacin did a good job. The 750 is the largest dosage I'm aware of, and I had a little trouble with side effects from that but when they moved it to 500 I breezed through it. So….. I've taken it more than once through the years (500) and it hasn't been a problem. "If" you are unhappy with the 750, you might consider asking for the 500. Made a big difference for me. Don't worry — MRSA was easily eradicated. It sounded scary to me but I learned it's not.

Thu, Jul 11 10:41am · Nausea control in MAC & Bronchiectasis

jkansas66 ……. I'm from Kansas also so I'm just jumping in here to say, for goodness sakes, just ask them to definitely do another sputum test. Sometimes you have to tell them what you are there for. Believe me…….. Where in Ks are you — I'm down in the SE corner

Tue, Jul 9 5:41pm · MRSA was found in my sputum in MAC & Bronchiectasis

Natalee.….. When I went to Mayo's first time, one of the bacteria in my sputum sample was MRSA also. I believe it's quite different in your lungs than in blood or skin. It wasn't hard to remove. Most of the time since then (four years ago) it hasn't shown back up.
Believe me, it's much easier than pseudomonas — which I'm dealing with now and have been for quite a while

Mon, Jul 8 3:55pm · I am new to Mayo and have my first appointment on Aug 5th. in MAC & Bronchiectasis

jammer …… It is a clinic setting. Never had to remove any clothing. They did scan of lungs from front and back side (people doing that were extra nice too. I was in Rochester but think they all treat people wonderfully. Saw pulmonologist after the scan and he told me what I had and that it was chronic but they could manage it. I was quite ill when I went and I asked him specifically if I were going to die from the disease. He smiled and said "You will die with it, but hopefully not from it". It is chronic and not curable. That was four years ago this Fall. I'm 78 years old so I think they are doing a good job with me. He prescribed what meds and told me how to take them. There is a pharmacy right there and they can fill everything for you. You will leave feeling much better than when you arrived. If I can answer any more questions, please just let me know. Oh yes, I coughed up some yukky phlegm for them to test. They had results of it within a couple of hours also. I hope this helps.