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

@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

@pfist Hi Shari! How are you doing these days? Just curious, did you ever ask your doctor about Coloidal silver? I know @kristiemlove would also be interested in hearing about this.

@windwalker888
Hi Terri
I still quietly follow along on the board.
As a matter of fact I saw my doctor today.
We discussed doing the rotation antibiotics like you do and he agreed. He wanted to do that many years ago but now I am in agreement that it would be the best coarse of action.
No mycobacteria has shows up in a year and a half now.
However I just got over a bad case of pseudomonas.
I got so congested that he did another broncoscope with the wash. He said every branch was all clogged up . It took him twice as long as he usually takes for a scope.
I still use the coliadal silver but only like a teaspoon or two a day.
I started taking the clear lungs and I must say that that does help once I upped my dosage. Saw on the bottle you can take a couple every four hours at first and when I upped my dosage it really worked. It says once you feel relief to go to down a maintenance.
I also am using the herbs which I feel have kept the mycobacteria away. Now we will be treating the bronchectsis with the rotating antibiotics.
I am so glad that it sounds like your doing well.
Thanks for all you do for this board in education us.
Shari

@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