(MAC/MAI) Mycobacterium Avium Complex Pulmonary Disease: Join us

@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.

@skylarkny Hi, I have not posted in most likely a few years, although I have continued to read most of the posts and have learned alot about this terrible bacteria that lurks in our lungs. I do find it confusing as to how to post back or remark on a posting I have just read, so I am not sure if I am doing this right. So firstly I would like to comment on the above post, I am so sorry for you that you spent such a scary night in Emergency coughing up blood, how horrible. I have had Maic and Bronchiectasis for several years now, and have never been on antibiotics, I have avoided them for fear of all the side effects that most people have mentioned here. I too am very active, biking and walking every day. I too produce alot of mucous, and work constantly trying to clear it from my lungs, with puffers, inhaled hypertonic saline, chest physio and aerobica. I cough alot at night. I had a Neuroendocrine tumour in my left lung 16 years ago,(never smoked, always healthy) and had a left lower lobectomy at that time. I think I started colonizing maic from either hot tubs, or tropical country shower heads, as my lung were most likely scarred from the big surgery and most likely I was immunocomprised.
I am now at the the stage of more changes on my last CT, and feel that I may have to go down the road of the big 3, but would still do everything to avoid that. I was trying to find any clinical trials that used inhaled Amickicin as a first line treatment. Any thoughts? cheers

@heathert @windwalker @boomerexpert @america Do any of you know if many people get tinnitus/hissing sound in the ears from taking Azithromycin? I've only been on it a short time but the tinnitus has definitely come on. Now with me all the time. Is there anything that helped? Did it go away? Thanks, Annie

@xfirerose You have every right to be tired and frustrated. Now, more than ever. Is there ANY way you can get to the Mayo Clinic is Phoenix, Az.?

@pfist Great hearing back from you! It sounds lile you are on the right tack now. What did you treat the pseudomonas with?

@windwalker of course I could drive there. Is there any service/social worker at Mayo that I can contact that can help me work with my insurance?

@xfirerose Yes, there is. call their billing dept. https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/contact-us

@windwalker

@anniepie Supposedly taking a Niacin suppliment is supposed to ease or get rid of tinnitis. I heard that from a friend who had tinnitis and her Naturopath dr recommended it to her. It worked for her she said.

@summer33 I have seen only my GP/primary carer. Having difficulty getting in touch with the Specialist because I am a 'public hospital' patient. (In Australia, many people on lower incomes go to public hospitals because they are cost free. But like the NHS in England you can't choose your hospital doctor). I will see the mycobacterial specialist at an appointment in 10 days time.
Yes Azithromycin can cause hearing problems and has some bad side effects but so do the other drugs in the big 3. But the Azithromycin is probably the most important drug for fighting this NTM.
For me, I was just a bit shocked to develop it so early in my treatment. However, so far the tinnitus I have is there but not too bad -- it gets a little bit worse as the day goes on. If it remains and doesn't go away, I can accept it as the price to pay to treat this awful illness. (But no, I definitely don't want any of the serious side effects that this drug or the others can cause! Please not for me, or for any of us -- I pray for that. The smaller side effects I will do everything I can to accept).
Ethambutol and Rifampicin / Rifampin (both in the big 3) can cause leg pain.and eyesight problems. Tell your doctor or specialist if you have them. Good luck to you, and to all of us. Annie