MAC nodules

Posted by bibes @bibes, Mon, Jul 22 8:50am

Hi, everyone. Hope you are having a good day. I thought I knew almost everything about the MAC disease was diagnosed with five years ago.
Six months ago nodules were found in my lungs. I am having another catscan in a few weeks. I haven't seen my pulmonologist since them.
I am 85 and have gotten more and more tired since that last catscan and shorter of breath. 'But still walk 2 miles every day. My questions are this:
Does everyone with MAC get nodules? What are your experiences with this nodule thing? Thank you so much for any information. Elizabeth

I have had nodules with my MAC. Have had biopsy on them only because I have had breast cancer 2 times and my Dr wanted to make sure the nodules were not related to the cancer. They have been due to the MAC. I too am short winded. I start a new med Arikayce tomorrow and am anxious to see the results. Glad to hear you are walking each day….keep up the good work.

REPLY

@bibesGood morning! There are different types of the disease: nodular and cavitory. Many women have the nodular variety. When the nodules reach a certain size they need to be biopsied. Most are harmless. Mine are watched due to the prevalence of lung cancer in my family. In spite of being very debilitating for me, I actually look at MAC as a blessing now ( most days:)). (Irene5)

REPLY

@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?

REPLY

@bibes I was diagnosed with MAC almost 5 years ago. My lungs were cloudy at first, then got better each subsequent follow up visit. The chest X-ray showed a nodule last year, but my pumonologist didn't think it was anything serious. So far I have not felt anything out of the ordinary. I don't have fatigue and am not short of breath. And I'm not on drug treatment and have no plans to go on any treatment for the foreseeable future.

Liked by alleycatkate

REPLY
@windwalker

@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?

Jump to this post

Thank you so much, Terri. That was a big help. May I ask you where the antibiotics that you were put on, some of the Big Three>
And what were their names? No, I have not yet had a susceptibility test? We have not gotten that far. No I am not nebulizing yet.
I think my doctor has the required knowledge. We will see. But he is so darling I have a crush on him and so do all his
other patients. Let's get real about what is important. Ha!

REPLY

@bibes I have been treated for MAC for about 19 months and have had it for 4 years. I have nodules. I had biopsy in 2015 and in April of this year. I have my first Mayo apt on Aug 20.

REPLY

@bibes You really need a sputem test done along with a suseptibility test. Insist on it. It should be determined how colonized your lungs are, and with what specie(s), and which antibiotics will combat it. If your dr doesn't think those things are important, then I would guess that they might be a little clueless about how to treat this disease.

REPLY

I am not coughing up anything. I live in Houston (I am really a Californian but that's another story.). I have just gotten pretty short of breath and
tired. Maybe the nodules haven't grown since 6 months ago. I hope I don't have to have the bronchoscope thing. The funny thing is my
mother was the first person ever to be bronchoscopes in the early forties. She had tb and it saved her life. They put some sort of heat
eight into lungs. At least that's how I remember it. She was in a sanitarium for three years.
I will let you know what happens after my upcoming cat scan (and I know about having too many of them). Thank you for your advice. I value
your counsel. Bibes

REPLY

I have Mac and also have nodules for years. They have remained stable and a few have gone away.

REPLY
@bennb023

I have Mac and also have nodules for years. They have remained stable and a few have gone away.

Jump to this post

@bennb023 …That's good to hear! Please tell us how you have managed this.

REPLY
@jkiemen

@bibes I have been treated for MAC for about 19 months and have had it for 4 years. I have nodules. I had biopsy in 2015 and in April of this year. I have my first Mayo apt on Aug 20.

Jump to this post

Jo Ann, I am thrilled that you are getting into the Mayo. I think you will like the level of care you will receive.

REPLY
@windwalker

@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?

Jump to this post

Hi Terri, I'm newly diagnosed MAC / atypical TB / Bronchiectasis earlier this year. The pulmonary doc put me on Azithromycin, Ethambutol and Rifampin all on an empty stomach in the morning. I was hanging in there for awhile but after 6 weeks my husband had open heart surgery and I really got off track with losing weight. I've always been thin but with the stress and anxiety associated with his surgery really did me a trick. My follow up appt. with the pulmonary doc ended with him saying I would need to stop all the meds–that I might not be able to tolerate the treatment. His plan at the time was to start me back on the meds one at a time to see if one could be pin pointed as to one that was affecting my appetite. When I went back he said NO–All meds or nothing. He then said, if you don't get your sinus straightened out I won't be able to do anything for you. Saw ENT doctor and now on second round of a different antibiotic and prednisone. My confidence is shaken with pulmonary doc but not sure how to go about finding another one in Montgomery, Al area to go to. I heard it is very difficult to even get in the group here and would go to Birmingham if someone there is good. I read the treatment you did and was very uplifted by the success you had. I'm 73 and just don't know what the future holds. My doctor has never given me a single piece of literature about my disease and was so glad someone put me onto the Mayo Connect. Do you have any suggestion on how to search out a doctor in this area who I might be more experienced that this doc seems to be. Thank you so much. I have learned an enormous amount just this week of joining Mayo Connect. Have a blessed day.

REPLY
@windwalker

@bibes You really need a sputem test done along with a suseptibility test. Insist on it. It should be determined how colonized your lungs are, and with what specie(s), and which antibiotics will combat it. If your dr doesn't think those things are important, then I would guess that they might be a little clueless about how to treat this disease.

Jump to this post

I think many pulmonologist are clueless when it comes to BX. I had to demand sputum cultures and then when Dx with Mac and several bacteria’s, he tells me the cure is worse than the Desease. Finally, when a cat scan identified BX ordered from a cardiologist, he passes me to an ID. I now have my first white sputum in 3 yrs

REPLY

Hi! I'm glad I saw this post! I live in Hoover Al, the Birmingham area. I have not found any Doc's in Birmingham that really know how to treat this. I had a Pulmonologist that sent me to an infectious disease Doc. We did the triple drug therapy for 2.5 years and infection was still active. At this point they were throwing up their hands..I got on Google and looked up Mayo. I was planning on Mayo in Jacksonville…then on this group, someone mentioned a specialist in Atlanta, a lot closer for me than Jacksonville.
This is my new Doc:
Dr. Colin Swenson, Emory at St.Joseph's
Pulmonary and Critical care medicine.
5673 Peachtree Dunwoody Rd.
Suite 502
Atlanta, GA 30342
404-251-1700
Fax 678-843-6870
He specializes in Bronchiectasis and MAC!!!!
You should be a lot closer to Emory. They are wonderful!! You will need a referral from a Doctor and he's pretty booked up but if you are really ill tell the person scheduling you and they will work to get you in sooner. They did that for me as I needed medication and had no Doc!!
He sees many "distance " patients. I've seen him twice so far and it's been a blessing.

REPLY
@fdixon63

Hi Terri, I'm newly diagnosed MAC / atypical TB / Bronchiectasis earlier this year. The pulmonary doc put me on Azithromycin, Ethambutol and Rifampin all on an empty stomach in the morning. I was hanging in there for awhile but after 6 weeks my husband had open heart surgery and I really got off track with losing weight. I've always been thin but with the stress and anxiety associated with his surgery really did me a trick. My follow up appt. with the pulmonary doc ended with him saying I would need to stop all the meds–that I might not be able to tolerate the treatment. His plan at the time was to start me back on the meds one at a time to see if one could be pin pointed as to one that was affecting my appetite. When I went back he said NO–All meds or nothing. He then said, if you don't get your sinus straightened out I won't be able to do anything for you. Saw ENT doctor and now on second round of a different antibiotic and prednisone. My confidence is shaken with pulmonary doc but not sure how to go about finding another one in Montgomery, Al area to go to. I heard it is very difficult to even get in the group here and would go to Birmingham if someone there is good. I read the treatment you did and was very uplifted by the success you had. I'm 73 and just don't know what the future holds. My doctor has never given me a single piece of literature about my disease and was so glad someone put me onto the Mayo Connect. Do you have any suggestion on how to search out a doctor in this area who I might be more experienced that this doc seems to be. Thank you so much. I have learned an enormous amount just this week of joining Mayo Connect. Have a blessed day.

Jump to this post

Hello fdixon63, i feel for you and I have been there with the Dr. in Montgomery Al. I too have Bronchiectasis and MAC and took the big 3 for 18 months. I look for a good pulmonologist there but can’t find any. There all in one group. My name is cila and you put your number on private message and I will call you. Blessings and hug to you.

REPLY
Please login or register to post a reply.