1. < MAC & Bronchiectasis

MAC nodules

Posted by bibes @bibes, Jul 22, 2019

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

Interested in more discussions like this? Go to the MAC & Bronchiectasis Support Group.

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jul 30, 2019
In reply to @jkiemen "@bibes I have been treated for MAC for about 19 months and have had it for..." + (show)
@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.

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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
fdixon63 | @fdixon63 | Jul 30, 2019
In reply to @windwalker "@bibes Hello Elizabeth, and welcome to our group. To answer your question about the nodules; most..." + (show)
@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?

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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
3 replies
Chattey2 | @chattey2 | Jul 30, 2019
In reply to @windwalker "@bibes You really need a sputem test done along with a suseptibility test. Insist on it...." + (show)
@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.

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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
2 replies
gaylewroc | @gaylewroc | Jul 30, 2019

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
5 replies
cila | @cila | Jul 30, 2019
In reply to @fdixon63 "Hi Terri, I'm newly diagnosed MAC / atypical TB / Bronchiectasis earlier this year. The pulmonary..." + (show)
@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
sounder27 | @sounder27 | Jul 30, 2019
In reply to @chattey2 "I think many pulmonologist are clueless when it comes to BX. I had to demand sputum..." + (show)
@chattey2

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

Jump to this post

Chattey2. What is B X!

REPLY
1 reply
fdixon63 | @fdixon63 | Jul 31, 2019
In reply to @gaylewroc "Hi! I'm glad I saw this post! I live in Hoover Al, the Birmingham area. I..." + (show)
@gaylewroc

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.

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Hi gaylewroc, Thank you so much for the information regarding Dr.Swenson. I called today to see how long it would take to get in to see him. New patient appt. would be mid October. I plan on seeing my current pulmonary doctor for next follow up in 2 1/2 weeks. I will see if he is willing to do a referral for me. If not I will see my primary for one and if not necessary, will just make appt without one. The office said it is not necessary but they usually do get one. Next calls are to my insurances. Thanks again.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Aug 2, 2019
In reply to @gaylewroc "Hi! I'm glad I saw this post! I live in Hoover Al, the Birmingham area. I..." + (show)
@gaylewroc

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.

Jump to this post

Hi Gayle! Emory has an excellent reputation and should be able to help you. They are a learning medical institution which puts you at an advantage. They WILL do the proper testing neccessary to figure out a custom treatment plan for you. Be sure to ask for a hard copy of your sputem & suseptibility results for your own records at home. That is important to have. For one thing, it will allow you to see what antibiotics will and won't work on your particular specie of mac. Emory probably wouldn't do this to you, but some drs do not do a suseptiilty test and just willy-nilly put you on the Big 3. That is not good, because some patients have a specie of mac that could be resistant to one of the 3. Many drs automatically put people on the Big 3 because they do not know much about the disease and it is an old-fashioned standby. If you click on my picture, my treatment plan will pop up. I want you to read it to show that there are other good ways to treat mac besides the Big 3. You may want to discuss that with your dr and also mention that this treatment plan came from a Mayo dr. I would mention the Mayo dr as they are held in high esteem by other medical professionals. I am glad that you are gaining knowledge from our group. It is important to know what questions to ask your dr. Best of luck!

REPLY
janovr | @janovr | Aug 18, 2019
In reply to @gaylewroc "Hi! I'm glad I saw this post! I live in Hoover Al, the Birmingham area. I..." + (show)
@gaylewroc

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.

Jump to this post

Dr. Swenson was my doctor before I moved to Florida! He was the first speaker at our Support Group that met quarterly at Emory. Love him!

REPLY
1 reply
fdixon63 | @fdixon63 | Aug 18, 2019
In reply to @gaylewroc "Hi! I'm glad I saw this post! I live in Hoover Al, the Birmingham area. I..." + (show)
@gaylewroc

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.

Jump to this post

Hi gaylewroc. I was at Emory last Friday and it was an awesome experience. Left with so much information and understanding of my conditions. I felt such relief just dealing with someone who actually knows about MAC and bronchiectasis. Thank you for reaching out to me and sharing with the Atlanta location info. One important thing is to let all my doctors know I am not to take Azithromycin for any other condition because it is the only med that can really have an effect of MAC.

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