MAC nodules

@bibes Hello Elizabeth, and welcome to our group. To answer your question about the nodules; most of us on here have, or have had nodules with this disease. Please don't be too alarmed as most people over 50 years of age have some nodules. Nodules can come and go and sometimes completely disappear. They are something to keep an eye on for both number and size. I have had the same two nodules for many years. My Mayo drs are not concerned about them because they do not change. I have been mac-free since 2014, but still have the nodules. I hope this helps. TIP: cat scans should only be done 5 yrs apart unless emergency situation. Those scans are powerful and deliver a lot of radiation. As for lack of energy, that seems to come with the mac territory. As you get a grip on your infection, your energy should return. I was never treated with the Big 3 antibiotics, but instead, was treated with two alternating antibiotics for 10 days each month. My mac cleared out after one year on that cycle. If you can get away with doing treatment like I had, it might be easier on your system. I know that some drs do not want to put people over 80 yrs of age on the 'Big 3'. It would all depend on your susceptibility test that shows what antibiotics will work on your specific specie of mac. Do you have a copy of your susceptibility test? We ALL should. Are you nebulizing any meds at this point? Do you feel your dr has adequate knowledge on how to treat mac?

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Hi all….
I went to Dr Swenson yesterday, first time.
I had gone to National Jewish Health a few weeks ago. Got a complete work up test-wise. I thought the experience there would quell all my questions and fears, but it did not. Although I did get some help, it fell short in informing me where my disease REALLY STANDS. I HATE TO SAY THIS ABOUT THEM, but it’s the truth. Sooo, I decided to go to Dr Swenson, who is a Mac/ Bronk specialist in Atlanta…an hour and a half from me. He’s really got a fabulous reputation! Totally specializes. Mac. Bronchiestasis!
The visit was fruitful on many levels. I loved him. He’s smart, dedicated and EXPLAINS THE TRUTH. IN DETAIL.
I HAVE BEEN GETTING A LOT OF RIB PAIN NOT JUST IN FRONT, BUT ON THE SIDES. I assumed it’s my costochondritis…..only worse, than I ever have had in 40 years. Also fibromyalgia too…..same scenario. Long story short…..
He said he was concerned about the Mac. That the Bronk was kinda mild, but the Mac is kinda extensive and he attributes my recent extra pain and shortness of breath to extreme inflammation from this Mac.
He said that fortunately, it shows no cavities ( yet), no bleeding, no coughing up blood, which can be expected if the disease, in my case goes untreated down the line.
His recommendation is that I start off, VERY SLOW AND CONSERVATIVELY on Azithroymin and the second med…I’ll look up the name. Firstly, it would be three times a week, not every day day. I would have an Opthomologist examine my eyes every three months.. the first exam would be a baseline visit. Then he will have something to compare with in future visits. I explained to him how I react to meds.. he really gets it.
He said he will be there for me me. EVERY STEP OF THE WAY. if I can’t tolerate them we will discuss and come up with solutions. He said ‘I’m going to watch you very carefully’.

If I do not do this, he said… my disease will most likely progress and then I will be in a position where I will HAVE TO TAKE THE HARSH MED ALSO, THE THIRD ONE.
After listening to him, and in my particular case, I MUST DO THIS or I could become a very sick girl. Progression.
He has many many patients using the the two…….he said. I heard from a friend that he is actually conducting a clinical trial with the two for people in my stage.
So I will start meds…slowly and small doses and with a lot of supervision from Dr Swenson. I’m very scared and have to adjust now.
I really think he was being totally honest, authentic and caring.

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Hi Terri, I am hesitant to do the Big 3. I am wondering if you could tell me the names of the antibiotics you took. Alternating for 10 days a month sounds much more doable. I know everyone is different but I'd like to check that strategy out with my dr. Thanks.

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Hi, I am 76 and was diagnosed with mac 2/22 and started the big 3 8/22. I had to stop ethambutal in April of this year as I failed twice the field view eye test and my eye Dr took me off the med immediately. 4 months later I was able to pass the test. I remain on azithromycin and rifampin with some nausea and diarrhea but luckily have not had any fatigue but do have insomnia and sleep only 3 to 4 hrs a night and no naps during the day. Everyone is different but it is worth it to take the meds. My cough is almost gone but I still have nodules found on cat scans but never cavities. I am now waiting for my last 3 sputim tests to see if negative. Previous once were 2 negative 1 positive. Since I have been on meds a year next month if any of the next tests are positive my meds may be changed. So I am looking into another chapter in this terrible disease. You just need to keep going and don't give up even at our ages. Good Luck in your journey and don't give up!1

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My doctor put me on the same meds as Terri as the Big 3 made me sick. They are a good fit until they are not. In all honesty I wish I had that cocktail for exacerbations. Susceptibility is the word of the day - if your MAC is not susceptible to either of them, that protocol won’t help you. Arikayce cured my MAC without my feeling side effects. Terri is an excellent resource.

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Hi Irene:
I never received a reply regarding the names of the cocktail meds.
Good to know about the Arikayce however. There seems to be so much controversy regarding the Big 3. I understand about 50% of people cannot tolerate the Big 3.

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