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

@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

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Chattey2. What is B X!

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@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.

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@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 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!

Liked by tdrell

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@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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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!

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@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. 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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@fdixon63

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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@fdixon63 I am new here. Where is Emory?

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@sounder27

Chattey2. What is B X!

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Yes I wondered that too.

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@bibes

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

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@bibes just read this note of yours. I’m having a bronchoscope Tuesday……is it that bad? I hope not.

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@sylvermoon8

@fdixon63 I am new here. Where is Emory?

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Emory Health Care St. Joseph's Pulmonary Dept. in Atlanta, GA. Scheduling number is 404-251-1700. They said you aren't required to be referred but usually are. Best of luck with everything. It is a real learning experience and knowledge is power.

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@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

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I’m new. What is BX?

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@sylvermoon8

I’m new. What is BX?

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BX is the abbreviation for biopsy.

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@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.

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@fdixon63 Hi. You can go to the http://www.ntminfo.org site for a list of mac/ntm specialists by state.

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