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(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us
MAC & Bronchiectasis | Last Active: Oct 29 5:15pm | Replies (9350)Comment receiving replies
@xfirerose, Hi. I had asked you in another post if you could take antibiotics since you were also on the immunoglobin therapy. I never took the 'Big 3', my Mayo dr put me on monthly antibiotics. For 10 days one month, I'd take ciprofloxacin, then on alternating months, I'd take doxycycline for ten days. A yr later I tested negative for mac, but stayed on those two meds for two more yrs to keep the mac away. That was in 2013. I test negative to this day.(I was severely ill) Perhaps you can tell my story to your doctor and be sure to tell him\her that this treatment plan came from a Mayo pulmonologist. I want you to mention that because Mayo physicians are highly respected. They are the cream of the crop in medicine. Without knowing your susceptibility test results to treat mac, my exact two antibiotics may not work for you, but perhaps another pair would. The meds are given alternately to prevent resistance.. One more thing, your dr can call your insurance company and/or Medicare and tell them that they need to make an exception for you to go to Mayo due to you having a rare disease. Sometimes, they can get that through. @alleycatkate was able to flip hers and got into the Mayo. Please keep me posted on what they decide for you
Replies to "@xfirerose, Hi. I had asked you in another post if you could take antibiotics since you..."
@windwalker yesterday I coughed up blood. I went back to my infectious disease doctor who was unhappy with me because my pulmonologist referred me to UCLA for consultation. So I had to beg them not to stop treating me. We agreed to start on azithromycin for 3 days a week. It has been a month since I was referred to UCLA and I haven't heard from them yet. My ID doctor finally agreedwith my pulmonologist that a biopsy at UCLA would be a good idea because the MAC has been growing fast and a sensitivity was never done. I just wish my doctor"s could communicate and not get their feelings hurt. It is so hard on me. My ID doctor also put in a request to my insurance for Arikayce inhalation. They faxed the request to my pharmacy; they gave it back to me very confused with it. I am confused too.. I am very tired and wish all I had to worry about was getting the right treatment and getting well.
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@windwalker Hi Terri, I am new to this group but have MAC and pretty sick at the moment. Thanks so much for your post about the different treatment plan you had. It sounds much better to me. And so good to hear it worked - it has given me some real hope. Yes it does depend on what the little critters are susceptible to. It's great to know a Mayo pulmonologist used this plan, Is there's some way I could find out who your doctor was? Thanks again. Annie
@xfirerose Hi and good luck to you. I hope the kind people in this group can help. Annie